I wanted to write this blog on Father’s Day, particularly
for any Dads who have stumbled across this who may be working through their own
grief at a difficult time. You may be aware that the excellent charity SANDS is
currently running a ‘Finding Your Way’ campaign which aims to tackle
taboos and break the silence that exists around baby loss. SANDS state that:
“Many men can feel side-lined when a baby dies and
sometimes struggle to reach out or find ways to deal with the emotions they
experience. We want to make it easier for bereaved men to be able to find the
right kind of support for them in the easiest possible way. Go to
http://www.findingyourway.org.uk and follow #FindingYourWay2019 for the latest news
about the campaign.”
To begin with – a note about Father’s Day itself, which I
have never been particularly fond of. Whilst Mother’s Day has been latterly
misappropriated from its intended religious beginnings, at least it’s a bona
fide event which has its roots going back some centuries. In contrast, Father’s
Day is quite the opposite and is an American innovation which dates back to the
mid-1960s. For this reason, I have never given the day any significant thought
and whilst we acknowledge it, my own father and I don’t have any strong track
record at marking it.
That said, since we lost Kaitlyn, the day has taken on a
more poignant significance. It is impossible to not be aware of the blackboards
outside pubs; “Dads eat free on Father’s Day!” or the marketing emails
from all manner of organisations tenuously suggesting you send some money their
way. No matter how cynical I am about the day itself, the surrounding hoopla
(admittedly much lower key than Mother’s Day) brings a conflicting and
upsetting set of emotions.
Every day begins with the thought of Kaitlyn, or rather the
realisation that a quadrant of our family jigsaw puzzle is missing. It’s not as
if any significant number of hours ever pass where I’m not thinking of her or
the collective emotional struggle in which we now find ourselves. But Father’s
Day has brought with it an additional layer to contend with and it has struck
me a number of times over the last week how much more difficult it has been
than I thought it would be.
I’m not ashamed to admit that I have had tears in my eyes a
few times over the past few days. Maybe this is an unremarkable observation,
after all it wasn’t too long ago that I would have cried almost every day of
the week. That regularity has almost subsided entirely now and any external
observers would (I suspect) not be able to detect any perceivable contrast to
my pre-2019 self.
Previous Father’s Days have been marked by a dominant
feeling – one of thanks for having the family which I had always wanted. That
feeling has not been eroded this year, I still took a moment this morning to
acknowledge my good fortune in having such a wonderful wife and daughter who I
get to see every day of my life. The contrast to the heart wrenching knowledge
that I have another daughter who I love and am also grateful for but remains
out of reach is extremely difficult to process. Whilst the grief itself is bad
enough and in its purest form extremely upsetting, I also think that this
contrast is the source of a great emotional pressure in its own right. I have
no answers on how to resolve this conflict except to acknowledge its presence
and, in common with all other feelings induced by loss, accept all that it
brings rather than try to fight it to elimination.
I know there will be many Dads around the world who are
having an especially difficult day today, grieving for a child who should be
here with them. There are no words which can give these feelings adequate
representation but they will still be here tomorrow, and the day after that and
all of the days still to come. I am proud of my love for Kaitlyn, particularly
on this very difficult Father’s Day and I wish all of the strength and support
there is for all of those who find themselves in such difficult times.
I thought long and hard about whether to share this post and it
has taken days to write. When we first received our sad news this week, my
instant reaction was to panic. I went into a tailspin about people’s reactions
– would we be judged for trying for a baby so soon after Kaitlyn? Would people
think I am broken and no longer able to carry a child? Over a couple of days I
told close friends about what had happened, and their reactions gave me the
confidence to write and share this next event in our story.
S and I knew from the start that we wanted to try for a baby as
soon as we possibly could. We were under no illusions that a new baby would
ever replace Kaitlyn or take away our grief, and neither would we ever have
wanted that. But the desperation and longing to hold our baby in our arms was
overwhelming, particularly for me I think. The weeks waiting for my postnatal
body to settle back down were full of anguish and impatience. Then we went into
weeks of monitoring – when would be the right time in the month to try? Did I
really understand what my cycles were doing? Looking back I realise I was
possessed, driven entirely by a visceral maternal longing to be pregnant again
and bring a baby home. Realising I wasn’t pregnant each month was a deep,
powerful kick in the stomach. As it turned out I actually fell pregnant again
the first month that my body was truly settled, but having never tried for a
baby so soon after giving birth I couldn’t properly see or realise this at the
time.
In amongst all of this, S broached the idea of a holiday. I was
far from keen; I didn’t want to leave Kaitlyn’s things and it felt to risky to
go too far away from being able to fall into my bed, my safe space, at a
moment’s notice. But I could see how much S needed a break, and M liked the
idea too. I acquiesced, on the basis that I would have to do absolutely no
planning and my only role would be to pack our things. This is exactly the deal
that was provided and S worked hard to plan the trip of a lifetime, which would
see us on San Francisco’s Golden Gate Bridge on 17th May, Kaitlyn’s
six month anniversary. We had the conversation about “what if I’m x weeks
pregnant or y weeks pregnant” and believed we had covered all possible outcomes,
although with hindsight I’m not sure either of us genuinely believed I would be
pregnant at all. As an extra precaution we had a conversation with our travel
insurance company who assured us we would be covered for all eventualities. We
booked the trip.
Less than one month later we had the positive pregnancy test.
This was a very different experience to the last two times; there was no moment
of happiness in the pit of my stomach, no instant bonding. But no fear or hit
of anxiety either, which I had imagined might happen. Just a sort of numb shock
and a mild feeling of relief to be pregnant again. I had taken a test earlier
in the week and it had been negative, but two days later at 11pm a little voice
inside my head convinced me to test again. A stupid time of day to do a pregnancy
test, using the cheapest, crappiest test ever created by man. The faintest of
positive lines showed up. I text a photo of it to my lucky midwife (11.15pm on
her non-working day, bear in mind) and asked her what she made of it. “A faint
positive?!” came the reply. On double checking that she definitely didn’t think
I was losing my mind, she said no there was definitely a line, advised I test
with a better test in the morning and said she’d had a feeling I was going to
message that day. I allowed myself to go to sleep with a faint ray of hope in
my stomach.
Pregnancy lasted for one month and four days. One month of the
most crippling anxiety I’ve ever felt in my life. I would wake up in the
morning with a tight chest, barely able to breathe. Whole days became exercises
in pure survival. I panicked about every single thing I ate, washing vegetables
two or three times over, not letting M anywhere near my face or my stomach. M
had tonsillitis when I got the positive test and I panicked about that for days
on end. Every single trip to the toilet was full of fear. But underneath it all
I felt relieved to be back in the club, to know there was a baby growing in my
tummy again. I tried to search for and hold onto that feeling.
Then the bleeding started. Every other day for two full weeks.
Seeing blood when you are pregnant is a truly terrifying experience for any
woman, but this was enough to make the room spin and make me sick to my
stomach; it was only ever spotting but that was bad enough. Frantic texts to my
poor midwife every single time the bleeding started. At six weeks I begged for
a scan to see what was happening. My fabulous midwife arranged for me to be
seen in the Early Pregnancy Assessment Unit (EPAU) and at roughly 6.5 weeks we
saw our baby, the tiniest of tiny beans, with a tiny but very definite
flickering heartbeat. Since losing Kaitlyn no positive emotions ever hit with
any force any more; the only feelings that ever wash over are grief and
sadness. But once again I allowed myself to feel a faint glimmer of hope, like
a tiny little candle flickering in a pitch-black room.
Carrying my little but extremely weighty secret around was so
hard; you’ll realise from this blog that I’m not prone to keeping things to
myself. It’s always hard in the first trimester, never knowing whether to say
anything to anyone or not, but again this was entirely magnified by loss, desperation
and anxiety. I thought my secret must have been barn door obvious to anyone who
clapped eyes on me, but it turned out this was just my paranoia. I was phasing
into work using KIT days, trying hard to be a normal, together person in an
office full of normal people, trying to function and focus on delivery. I felt
like a Russian doll, consisting of an outer pretend layer and a heavy layer of
secret, anxiety-ridden pregnancy within. I started to crack and told a tiny
handful of people my secret, realising that I couldn’t carry on without
support. Each time I shared the news, I almost choked on the words and felt an
immediate wave of doom and foreboding. I had put all of this down to just what
it’s like to be pregnant after a devastating, full term loss. But looking back
I realise now that I was never physically settled and never felt physically
right. My body didn’t feel like it belonged to me any more and I seemed to have
lost all control over everything. I wonder if instinctively my body knew this
was not going to work out. I will never understand how I managed to put the
external Russian doll on each day and go out into the world.
One week after our first scan the bleeding increased. We phoned
the hospital at 5am and begged to be seen that day. This was the start of my
experience with the EPAU not being as I would have hoped. After Kaitlyn died we
were promised everything – personal attention, scans, access to EPAU. But when
it came to it, it wasn’t like that at all. On this particular day a terse
conversation with a midwife, who seemed very unhappy about me being scanned,
concluded with me in tears asking her if she had any idea what it was like to
have your baby die at almost 40 weeks. I was booked in for later that day. So
many things about this experience have become clear only with hindsight, and S
and I agree that this scan was one of them. The doctor was tense, opaque and
evasive. She had found a bleed between the sac and the uterine lining, called a
subchorionic bleed (we only found out the name later). Usually they resolve on
their own and do not always cause miscarriages, though we knew we were now at
increased risk. I tried and tried to probe for more information but was met
with very effective stonewalling. It was one week until we were due to board an
11-hour flight to San Francisco so I asked if I could be scanned again the day
before we flew, just to be sure that something bad wasn’t going to happen on
the plane where we couldn’t access any help. The doctor was baffled, and asked
what I would do differently if I did find out it was bad news? She was
genuinely perplexed when I said I probably wouldn’t get on the plane if a
miscarriage was found to be imminent, but she reluctantly booked us in for the
following Wednesday. Once again, we had seen our baby’s heartbeat, but this
time we left feeling uneasy.
A few days later, on the Sunday night, I suddenly came over very
unwell. A cold prickly feeling all over my skin, extremely lightheaded and a
very strong metallic taste in my mouth. I worked hard to stay calm and told
myself these were just normal pregnancy symptoms kicking in, even though I knew
I’d never felt like it in pregnancy before. A temperature reading of 38.5
degrees saw me texting my midwife again; she advised me to take paracetamol and
get a GP appointment in the morning to check for an infection. I did exactly
that. The GP surgery were very helpful and I had a long appointment with a
caring, knowledgeable GP who understood all too well the anxieties of early
pregnancy when all has not gone well before. She diagnosed a UTI and put me
straight onto pregnancy-safe antibiotics. At this point I was a little nervous
as I was already taking precautionary low-dose aspirin and was about to start
high dose folic acid, as recommended by a consultant, but I was reassured that
these were all safe things to take in pregnancy and the potential benefits made
them worth it. I headed off to work, wondering what on earth I was going to say
about coming in for the day at 11am. My exterior Russian doll was starting to
crack under the strain.
Over the next 24 hours the feeling of dread in my gut
intensified. Tuesday morning, two days before we were due to fly, I once again
text my midwife and asked if I could be seen that day. Miracle worker that she
is, she booked me in for 3.30pm and spared me any more narkiness with the EPAU.
I was due to see her at 4:30pm already for my 8-week booking appointment. I
spent the morning distracting myself with tasks and met a friend for lunch,
then headed straight off to the hospital with S meeting me there. My lovely
midwife was also joining us in the unit for this scan and we chatted easily
enough in the waiting room while we waited to be called in. At this point S and
I had not started packing for America. Every time we thought about it, one of
us got the severe heebie-jeebies; it was as if we knew deep down that we would
not be going. When we were called into the room, I explained to the nurse that
the first thing I wanted to know was whether there was a heartbeat and I didn’t
want to look at the screen before I knew everything was ok. I was preparing
myself for the worst, completely on autopilot. She began the scan in silence,
which stretched on for far too long, and for the second time in six months I
just knew. All this time I had thought I had been protecting myself, not
allowing myself to get attached, not feeling any strong positive feelings,
knowing that the bleeding was bad news. But when the nurse said that she
couldn’t see everything she should be seeing for eight weeks, meaning the
heartbeat had stopped…I fell apart instantly. In that moment I knew everything
I had told myself about shielding myself from attachment and disappointment had
been total bollocks. It’s just not possible to know you are growing a baby and
not be attached, not feel hope and love, and some kind of anticipation. I felt
the familiar feeling of my heart cracking apart, albeit not as deeply as when
we lost Kaitlyn; it was horrific nonetheless. I suddenly realised all the
things I had allowed myself to think, for split seconds in the deepest corners
of my mind. A baby in time for Christmas. A due date in between Kaitlyn’s and
M’s. A sibling for M before she turned four. I didn’t build hopes and dreams
for this little one, as I had for Kaitlyn, but these felt like deep, unfair
losses. I had allowed myself to believe that my story would be one of a rainbow
baby around a year after my loss, like so many other stories I know of. I had
it proven to me once and for all that day that a parent can never shield
themselves from the hopes and love for a growing baby, even if they try.
My next realisation was that we wouldn’t be going to America…and
that everyone would know something was amiss. I panicked. I wanted to run,
hide, never utter a word of what had happened, emigrate so that people would
never know what had happened. I sobbed on S and my midwife that the whole world
would know, the whole world would judge me. For trying to replace Kaitlyn, for
failing as a mother once again. It was a very dark couple of hours, standing on
the edge of a chasm, unable to leave the hospital, unable to make the decisions
that were needed. Finally I ran out of tears. S, our midwife, the nurse and I
sat in a quiet room and discussed the options. I could wait for things to
happen naturally, which I knew my mental health would never survive, or I could
opt for “medical management”, which involved a pessary and more bleeding,
cramping and risk than I knew I couldn’t handle. That left “surgical
management” under local or general anaesthetic. I had never had a general
anaesthetic before and I absolutely did not like the idea of having one now;
luck hasn’t exactly been on my side recently, and whilst I have spoken in the
past of wishing I could be with Kaitlyn, the idea of leaving M behind had me
hyperventilating again. The nurse explained that the procedure is actually
safer under GA, there is less chance of complication and with more doctors
trained to do it under GA they could see me the next day, which they felt would
be the only fair option for me given the mental strain we were under. I went
along with it, though it felt more like being swept along a river than making a
decision. I was given a leaflet about miscarriage and told not to eat after
7.30am the next day, to drink nothing but water until 10:30am and then nothing
at all, and to come in nil by mouth at 11am.
Our neighbour had picked up M from nursery and S went to collect
her when we got home. I wanted to hold her in my arms and spend what was left
of my evening with her; I had a deep sense of foreboding that I couldn’t shake,
a fear that this was the last evening I was ever going to spend with her. The
last time M’s routine had been unexpectedly shaken was when Kaitlyn died and we
have deliberately kept things very stable for her since, so she knew that
something was amiss; it all bubbled out of her 3-year-old brain and I spent
much of my anticipated time with her managing a very long, very difficult
meltdown. One can hardly blame the poor girl after all the crap she has been
put through. Finally exhausted, she quietly said she was hungry and curled up
in my bed for a cuddle, a carrot and a glass of milk, her snack of choice. I
held her close and we watched I-don’t-know-how-many episodes of Bing while I
prayed to Something that we would get many more evenings like this together, tantrums
and all. It was 9pm by the time she snuggled into her own bed and fell asleep.
I spent the rest of the evening crying in S’s arms, my heart breaking again,
and both of us gutted that we would have to tell M that we could no longer go
on our long-anticipated trip. We talked of the trip a lot, it had come to be a
lifeline and a symbol of hope and perhaps starting to be even vaguely like
normal people again. We agreed that no matter what it took, we were re-booking
and going on that trip.
The next morning we took our time over getting M off to nursery;
she had breakfast at home and for the first time in months I went with M and S
to drop her at nursery. I had thankfully woken up without the deep sense of
foreboding but saying goodbye to M at the nursery gate was still hard, and I
watched her walk with S through the doors and off towards her room until I
couldn’t see her any longer. S had phoned my parents and his the night before,
none of whom knew I was pregnant; we had been so scared of putting our families
through more hell. My parents arrived, as they were going to be there to pick M
up from nursery later on, and we spent some time together talking through the
events of the last month. I packed a bag, had a shower and headed to the
hospital, already starving and thirsty, wondering how on earth I was going to
get through the day or even if I would. It must all sound so melodramatic,
worrying so much about what is actually a pretty routine, low-risk procedure,
but my own mind had gone into complete and total meltdown, much like my poor
girl’s the night before.
Things did not start well on the EPAU. The waiting room was not
that busy but there was a noisy and chaotic family in there and I couldn’t
handle the fuss, I needed quiet, so I told the nurse to come and find me in the
corridor when they were ready. There was me and one other lady in for the same
procedure; we were taken into the Women’s Health ward where we were promptly
met full in the face by the most tiny, beautiful baby girl, with a full head of
dark brown hair. I stared, half in horror and half wondering whether Kaitlyn
had somehow appeared in another family’s arms. The lady next to me went to
pieces; I got a view of what it must have been like to watch me fall apart like
that twice since November. She was taken off to a side room and as she left I
heard her yelling at the staff, swearing and telling them how insensitive they
were, asking how they could have let that happen. I silently cursed myself for always
being so well-behaved, but when the staff came to apologise I quietly said that
I agreed with every word the other lady had said. Four different staff came to
apologise; I could see that they desperately wanted me to say “don’t worry,
it’s ok.” I just couldn’t give them that this time. They asked if I was happy
to stay on the ward, I replied that if the baby came back I would get up and
leave, I didn’t care how unwell I was. The family and the baby were moved to
another side room.
There followed much waiting around with staff popping in and out
for various things: checklists, apologies, changing me into a gown, taping up
jewellery and removing nail polish. Blood tests, which I haven’t had since
Kaitlyn was born; I never used to bat an eyelid at blood tests but these
brought back serious PTSD symptoms like I’ve never had before. I was right back
in the Butterfly suite, yelling as the midwife took 10 vials of blood after I
had given birth. Each individual staff member was absolutely wonderful, kind,
compassionate and looked after us well. I was struck by the same thing I’m
always struck by in the NHS – lots of wonderful, caring individuals working
within a system that doesn’t quite work, with no-one ever quite taking an
overview of all the things that are happening at any one time. A lovely
registrar came to talk through the consent form and all the possible
complications. I was already terrified at the 1 in 100,000 risk of death under
GA, and the 1 in 10,000 chance of emergency hysterectomy wasn’t comforting
either. I kept thinking back to the conversation in February with the Fetal
Medicine consultant who said that what happened to Kaitlyn was a 1 in 1,000
chance; 1 in 10,000 didn’t really seem too outlandish any more. There were
other, much higher risks – perforation to the womb, a possible need to perform
laparoscopy or incision to repair any damage. Infection. Serious bleeding. The
conversation went on and I seriously considered walking out; I swallowed down the
thought and signed the form. The registrar said she had requested I was first
on the list and I was very grateful to her for that. We talked a little about
the PTSD and she made me realise that it’s something I’m going to have to seek
help for, especially now; I thought I might have got away with it and been able
to process it on my own, but this whole experience has put paid to that approach.
At a little before 2pm they came to take me down to surgery. The
main theatres are right over the other side on the hospital and I was asked
whether I wanted to walk in my gown or be pushed in the bed. Neither sounded
good so I hesitated, and they said they would push the bed; with hindsight I
wish I’d walked as being pushed made me feel so completely out of control. The
ward sister had come down with me because S wasn’t allowed and she didn’t want
to leave me alone; she was there the whole time, holding my hand until the
anaesthetic kicked in. In the anaesthetic room I met the anaesthetist, who was
utterly baffled at my non-stop tears and lack of ability to hold it together at
all. “You’re going to make yourself sick like that” she admonished; the sister quietly
filled her in on my history, at which point she immediately softened. A
familiar face hove into view at the other end of the bed…it was one of the
Consultant Obstetricians, who had performed our second scan to confirm that
Kaitlyn had passed away. It might sound very strange but I was oddly glad to
see him; he had seen my name on the list and insisted on performing my
procedure himself. That was the last thing I remember before the anaesthetic
kicked in and I fell asleep.
I woke up with a start in recovery, just over an hour later.
It’s 1-1 care in recovery and the nurse in my bay gently removed a tube from my
throat. I remember thinking “I’m alive. And the baby is gone.” I cried. The
nurse told me we would be heading back to the ward in fifteen minutes, where S
was waiting, pretty bloody anxiously from the look of relief on his face when
he saw me. I already don’t remember much about the rest of recovery, just
impressions. A short visit from the consultant to explain that everything seemed
to have gone perfectly with the procedure and book a scan to double check
everything in four weeks’ time. Paperwork from the hospital to help with our
travel insurance claim. Eating toast and a yoghurt as if I hadn’t eaten for a
year and drinking sweet, milky tea. I hate milk and tea. Discharge summary. A
visit from our lovely midwife. I was feeling calm, numb, the implications of
everything hadn’t hit yet, the emptiness and loss hadn’t hit yet. All I was
really concerned about was getting back home to M. For the ten millionth time
since Kaitlyn died I wondered how I ever would have got through any of this if
I didn’t have M.
M has been calling lots of things “Bubbakins” recently
(including me!) and so we called our precious little one “Little Bubba.” For
some reason I keep referring to him as a boy, so we’re sticking with it. Maybe
it’s mother’s intuition, maybe it’s not being able to stand the idea of losing
another girl. His symbol is a little duckling because on the day I found out I
was pregnant I had been to Kaitlyn’s special spot in our home village and taken
photos of the ducks to show M. His special colour is therefore yellow. Even in
the short time I had Little Bubba with me there were so many things we did
together. I sang in a concert at Winchester Cathedral – another pregnancy,
another singing connection. We attended the Saying Goodbye service at the same
cathedral; part of the service included ringing a handbell for each baby you
were grieving, and S and I both accidentally rang the bell twice, which we both
remarked on at the time. I went into London for a meet up of bereaved parents
just two days after learning I was pregnant. We visited Salisbury and Somerset,
were visited by a dear friend from Germany, went on a pottery painting evening
with other close friends. S had his birthday. There were all the little
snippets of daily family life – cuddles with M, meal out for a family birthday.
It’s different this time, because Little Bubba couldn’t hear or sense anything,
but he was there in my heart and I am sure that he felt my love. I have been so
struck by how many things you can carry your growing baby around for even in
such a short space of time, how many events or happenings that they can be
there for, just in the very corner of your mind. I am struck again by the
absolute privilege of being a parent. It’s bastard hard, all of it, and
especially where we are now, back almost to our very darkest days again. But
carrying Little Bubba for a month was my special privilege.
Once again I find myself thinking through my spiritual beliefs.
This loss is very different to Kaitlyn but it has rocked me to my core. Little
Bubba had a heartbeat, but poor little boy didn’t have much else yet, only the
very beginnings of nerve development and brain development. I’m not sure
whether I believe he had his soul just yet, or whether it was a case of his
body getting ready to house his soul. Some of these things I have to think, for
my own protection. I know he wouldn’t have felt any pain, or fear. Once again
M’s terrifying intuition kicked in – just two weeks before losing Little Bubba,
she said out of the blue “Mummy, how about we grow another baby?” I was
floored. I asked if she would like that and said that perhaps we could when she
was older, but maybe not just yet. We had been so careful never to talk about
the pregnancy in front of her and I didn’t want to get her hopes up at all. She
doesn’t know what has happened this week, she thinks I have a stomach bug and
that’s why she can’t jump all over me; it’s a very different circumstance to
losing Kaitlyn, and I refuse to break M’s heart over something she can barely
understand. Once again there were strange portents; in 34 combined years of
driving neither S nor I have ever run over an animal. In the month I was pregnant
with Little Bubba we hit a pheasant and a crow, both of which flew out of
nowhere, and to top it all found a little sparrow dead on our garden patio. I
have to say the sparrow sent me over the edge. Once again someone shunted our
car – very different circumstances, but the last time our car was damaged was
when I was twenty weeks pregnant with Kaitlyn. Was the universe trying to
prepare us? But then where do I go with that…if there is an active Universe,
then does that mean it has punished us again? And why? After Kaitlyn died all I
could think about for a while was all the ways I had been a terrible parent the
last 3 years – working full time, not having enough patience, not doing enough
fun things with M, complaining about finding the first year of her life so
hard. Absolutely none of those things apply this time and I thought I had shown
the universe that I had become a better, more considered parent these last 6
months. So why us, why this time?
It hurts to know that it wasn’t our time and it wasn’t Little
Bubba’s destiny to join us. Better to face it now than to go through another full-term
loss, but the pain is very real and there is one more deep, irreparable crack
in my heart. Alongside my hope and determination to have another baby to bring
home, other thoughts are forming; a deep-seated fear, and the beginnings of the
idea that perhaps we will never have more children in our arms. I’m not ready
to accept that as our fate yet, but that doesn’t stop the fear and hopelessness
from taking hold. For now we are hunkering down and focussing on us. I am
returning to work part-time, we’ve rebooked our holiday. I will spend some time
eating what I want, drinking what I want, taking as many baths as I want,
exercising, getting in shape, pampering, getting help for my mental health and
just generally looking after myself. My focus is on re-entering the world as a
vaguely normal person. It’s not a case of hedonism and enjoyment, those
concepts are absolutely alien to me now, it’s about simply trying to live a
life as something more than just a broken husk of a person, and to live a life
that isn’t entirely led by a desperate drive to be pregnant again. But I need
to protect myself too. Certain situations involving babies, sisters and pregnancies
push me over the edge and I need to remove myself from that kind of pain until
I know how to process it. If that affects the way that I am able to interact
with you, or means I need to block your news on social media, then please know
that I don’t do this lightly and it brings me no joy whatsoever. It is simply
self-preservation. Our journey isn’t over yet, and there is no question of us
giving up here and never trying again. But I need to use this time now to get
myself mentally and physically ready to step back into the ring once more.
Dedicated to our perfect Little Bubba (15.05.19), cherished and gone too soon. May you find love and peace with your beautiful big sister.
SiMBA provide mini memory boxes for babies lost up to 14 weeks. After all our family has been through, it seemed right to mark Little Bubba’s presence, however short.
This week was Maternal Mental Health Week. This post isn’t focussed solely on perinatal mental health, but it touches on some of the issues that affect mothers’ mental health on a daily basis.
Last week I posted an article from the Guardian about the President of the National Childbirth Trust (NCT) stepping down amid “acrimonious rows about about infant feeding and the type of postnatal support it offers.” Seemingly the Executive team want the charity to focus more on “generic “parent support”, with an emphasis on postnatal mental health.” However the ex-President, Seána Talbot, believes the charity should focus on its core mission – “preparation for birth and early parenthood and additional support for breastfeeding.”
Before I get started in earnest on this topic, I should state a few things upfront, mainly that I am by no means anti-breastfeeding. I fed my eldest daughter for almost a year until she decided herself that she was done with it. I was fortunate enough to have a pretty easy time of breastfeeding after the first few weeks, once things were established. Those first few weeks were hard, but I never got mastitis and my mental health was in a tolerable state most of the time so we persevered and it paid off. There is nowhere near enough high quality, free, accessible support for breastfeeding and I absolutely think there needs to be such support in place for women who just need someone sensible and experienced to help them through those tough early weeks.
Reading the article reminded me of my own experiences of the NCT with M and I’m not alone, judging from the conversations that followed on Facebook. My issue isn’t to do with actual breastfeeding at all, it’s to do with the pervasive culture and language of pregnancy, childbirth and infant rearing that seeps into parents’ minds, especially women’s, and makes us prisoners of our own emotions and love for our children. And it doesn’t just come from the NCT, it’s absolutely everywhere, and sadly sometimes it comes from women ourselves. But certainly, in my own personal experience of the NCT, it is rife in their various classes. The underlying messages are “avoid surgical intervention at all cost” and, as one friend put it, “you can always breastfeed if you try hard enough.” I remember at my antenatal class basically being told that all drugs would likely harm my baby, apart from gas and air (which I find thoroughly ineffective for anything other than making me sick) and water (helpful and relaxing in all sorts of ways, but not pain relief!). We did an exercise where one person had to lie down on the floor and be the “patient”, and ten or so other people had to be the various different healthcare professionals that would be present in a c-section. Now in one way this was useful, because if you did find yourself in surgery then you were prepared for the sheer number of people that would be milling about. And it was helpful when I found myself in surgery being stitched up after M’s birth and staring as a similar number of people introduced themselves. But the other take home message from this exercise? Do absolutely everything you can to avoid a c-section, because look how scary it is. Stillbirth was not mentioned at all in any classes I attended. Nothing can prepare you for the loss of your child, but we should be mentioning it gently as a possibility so that parents at least know that it can happen to anyone at any time and sometimes your birth might have to be “medicalised” to reduce the risks.
As for breastfeeding? The seriousness of tongue-tie was
downplayed and made to sound like a modern, over-diagnosed fad. The message was
that breastfeeding is easy. But it isn’t always easy. What did women used to do
in the good old days, before evil doctors and unnecessary interventions
existed? Well, honestly, babies who couldn’t take to breastfeeding probably
struggled, suffered, went to a wet nurse and in the worst cases, died. We’ve
clearly got the whole setup wrong here. We tell mothers that breastfeeding is
easy and you’d better do it or else your child will die of diabetes in their
twenties. Then we launch them into the world of breastfeeding with inadequate
support at a time when they are physically and emotionally recovering and
feeling a little bruised, tearful, inadequate, vulnerable and exhausted – at
least I know I was.
Is it really such a terrible thing if mothers choose not to breastfeed? I know we are told about all those studies that prove that breastmilk is magical unicorn juice (as in The Telegraph earlier in the week). But many of those studies cannot prove causation rather than correlation, cannot differentiate between breastmilk itself as the foundation of better health and being the offspring of the kind of mother that is more likely to breastfeed, with all the other environmental factors and parenting choices that go alongside. For a really convincing study on breastfeeding and obesity, I’d like to see one that looks at breast/bottle feeding and the diets children are given between 6 months and 5 years, then compared to obesity…because I for one have definitely seen children given some questionable choices, and many of the things aimed at children (fruit yoghurts, cereals, malt loafs etc. etc.) are chock full of sugar. I am nowhere near convinced that formula feeding is the main cause of the childhood obesity problem in the UK. Of course, women who want to breastfeed should have access to high quality, well trained and correctly informed support from both the health service and the charitable sector, regardless of their demographic. But both halves of the equation need to be addressed. Alongside excellent support we need to take the pressure off, stop evangelising and guilt-tripping and be upfront about the fact that sometimes breastfeeding is hard to get the hang of and takes time. Perhaps if the tone of the conversation was right in the first place, more women would feel able to continue because we wouldn’t feel like we had failed on day 1. This is where the NCT could really help women if they did focus a little more on maternal mental health. Focussing on breastfeeding and focussing on mental health are not mutually exclusive, and I’m not sure why Talbot seems to think they are.
By now you might be wondering why I’m on about breastfeeding on Kaitlyn’s blog. Well, absolutely the same argument applies to a baby’s birth. Again, the take-home messages from the NCT are “any woman can give birth, you’re all built for it, women have been doing it for millennia, in Africa they don’t have all this medicalisation, and don’t forget pain relief will irreparably damage your baby.” Any woman can give birth, you’re all built for it – perhaps in theory. But things go wrong. Babies are in wrong positions, labour slows or progresses too quickly, babies become distressed. These are all also natural phenomena that have happened for millennia, it’s just that in the ‘good old days’ women, or babies, or both would die. In Africa they don’t have all this medicalisation – cue photos of birthing positions designed to replicate women holding on to branches of trees. There are of course innumerable benefits to keeping birth calm, to using effective positions and to instilling in pregnant women a confidence that the baby can come out, despite what seems like an unnecessarily insane design from nature (I’m sure she has her reasons…). But you haven’t failed if you need a bit of help. In the olden days, or in more deprived parts of the world, you go without pain relief because you have no choice. You take certain risks because you have no choice. In the UK not only do we have a choice, we have highly trained medical and midwifery staff and a system in place to ensure we can access whatever medical help we need without running up huge, unpayable bills. That is not an invitation for every first-time mother to run off and book a c-section – it is major surgery, after all, so carries its own risks. But enough of the guilt for women who don’t give birth “naturally” (urgh that term. The choice to describe that kind of birth is “naturally”, “normally” and “vaginally”. The first two are utterly inappropriate and frankly the third just bums me out. New terminology needed please!)
Last week I went to my first meeting of our local Maternity Services Liaison Committee (MSLC – now called Maternity Voices Partnerships). I came across it on Facebook and wanted to inject the voice of people who have lost babies into the work that the group focusses on. I listened to a woman tell her story; because of her BMI she wasn’t allowed a home birth or water birth and the consultant wanted to monitor her and her baby closely throughout late pregnancy and labour. I have to be honest, that sounded excellent to me. “I had a natural birth, but everything went wrong” she chuckled, an interesting turn of phrase given I had already shared Kaitlyn’s story. She was deeply unhappy about how her consultant had treated her. Now some might say that this is a case of a particularly risk-averse consultant, maybe even too risk averse. But risk aversion is not a bad thing. There’s very little I wouldn’t give to be able to turn the clock back and make someone treat my pregnancy and early labour with that kind of attention. Another woman didn’t like that her team had wanted to induce her at “just” 9 days overdue. My stomach did a backflip – poor Kaitlyn died at 39+6. These experiences and opinions are valid, and I genuinely don’t think people should just shut up and accept horrible birth traumas or unnecessary interventions that might have impacted on their mental health without speaking up. But I guess I’m there to bring the other side of the story. In the above case, not everything went wrong, because the bouncing baby was there, in the room, full of smiles and crawling under the table. People who lose babies are not sitting around these tables feeding into discussions that shape local care and the culture of how we treat pregnancy. Perhaps more of us should be, but it’s hardly a surprise that we’re not when you’re already grieving and exhausted just from taking a shower that morning and then you have to shout three times louder to be heard over the natural birth movement. But I’m determined to stick with it. Balance needs to be brought back to the conversation, and that’s what I’m striving for, balance and a fair representation of all types of experiences and views.
Ever since I was first pregnant with M, I knew I wasn’t going to be swayed by “natural is best.” Despite my personal beliefs and tendency to question every single thing I am ever told, my pregnancy with Kaitlyn was labelled “low-risk” until the bitter end. On the day I was in labour, I believe that the mindset was: this woman is “low risk” and her contractions aren’t 1 in 10, so she can’t really be in that much pain, she just can’t cope, there’s no actual problem here. It’s one thing for the pervasive “natural is best” mantra to infiltrate the minds of mothers and screw up our mental health. It takes things to a new level of unacceptable when this mindset affects our healthcare, to the point where the possibility of risk is overshadowed by natural being best.
Even after Kaitlyn died, the mindset continues to dominate. From the member of staff who got hung up on whether I was referred to as a “patient” or a “woman” in the hospital report. I couldn’t care less, let’s just focus on finding out why my daughter died please. From the doctor (thankfully not my regular consultant) who told me that if I did ever go on to have more children, a c-section would not be indicated (I think you’ll find it would) and I should do “mental press-ups” to help me get over my mental associations between labour and my child dying. Erm, I think not. I know full well that c-sections are no walk in the park, they are serious surgery and are certainly not without risk and a lot of physical recovery attached. I also agree that working on my mental state to combat the anxiety of even getting out of bed in the morning is no bad idea. But natural is not best to the point where someone should have to relive deep trauma and take the risk of something terrible happening to a potential future baby. It was said in a kindly way by a kindly man who had helped us to piece together what most likely happened to Kaitlyn, but that part of the conversation has nonetheless played on my mind for weeks. The NHS has a duty to ensure that all risk is thoroughly assessed and that includes risks to mental health. It also has a duty to ensure pregnant women are armed with a fully rounded set of accurate and objective information. I have heard staff say that they are hesitant to direct women with risk factors not to think about home birth because they have had women react so badly to it in the past, like in the MSLC meeting. This to me is folly. Of course women’s wishes for their births should be thoroughly considered, I certainly do not want to move to a culture of pregnant women being “done to”. But if a highly trained clinician is telling us that there’s a significant risk, we need to appreciate that they are not saying it simply because they love a medicalised event, as the NCT suggests. One of the reasons that women react so badly sometimes to being told they cannot have what they want is because the mantra of “natural is best, you’re a failure in all other circumstances” prevails. The NCT could do a huge amount to change this if they chose. Of course, this is in direct contradiction to their raison d’être, so perhaps it is time for a rise in alternative antenatal providers.
So, what needs to happen? Pregnant women need to be treated as intelligent, robust adults with the ability to digest information and make decisions; the scare-mongering and using pregnant women to push a cultural agenda needs to stop. This means presenting a completely objective, balanced argument as well as properly considering women’s wishes. For example: breastfeeding is great if you want to do it – it’s great for bonding, cheap, convenient and some studies suggest might be good for your child’s health. It’s not always easy, but with the right support we can help you to get there. And if we really can’t help you to get there, then please don’t worry. Formula won’t harm your child, all kinds of feeding are bonding, and it is just as important to have a mentally well mother as it is to feed from the breast. Or: “natural” birth with fewer interventions is safer for the mother and in the majority of cases better for babies too. In a vast majority of times it turns out fine. You need to be aware that 0.5% of the time pregnancies don’t turn out fine; babies can die right up to the very end, and the NHS is here to do its very best to protect you and your baby and prevent this from happening. This might mean that we advise, or even strongly advise you to take a course of action you hadn’t originally envisaged. But we will work together to make sure you understand why and that we can implement a suggestion in a way that fits with your wishes. A key part of what is needed is to bring baby loss and stillbirth out of the shadows and tell pregnant women about the risks in a calm, factual, non-hysterical way. Both the NHS and the NCT are light years from working with pregnant women in this way. It’s no wonder that women are turning to antenatal providers other than the NCT, in a bid to try and find a sensible, balanced voice, preferably from someone that actually cares about their mental health too. I strongly believe that fundamental change is needed in the antenatal care pathway. The practice of putting people into risk boxes at week 8 and managing them according to their box is a blunt and ineffective instrument. There have been articles in the news recently about introducing more scans and better management of gestational diabetes. I don’t believe that the ‘tape measure on the bump’ approach (i.e. fundal height measurement) is sophisticated enough, especially when you’re in the “low-risk” box so barely actually see the same midwife twice in your pregnancy. We use technology in factories to ensure furniture is cut to correct lengths, but we don’t want to maximise it to measure how a human being is developing. In my view we should start by giving all women three growth scans in the third trimester, to check for the rate of growth rather than the absolute size of the baby, as well as a scan in the second trimester to look in detail at the functioning of the placenta and umbilical cord, repeated in the third trimester if necessary. These things of course require public money and resources, which is a whole blog post in itself. But they also require a cultural shift to an acceptance that having a baby is one of the riskiest activities a woman will undertake in her twenties and/or thirties. It might be natural, but it is to be taken seriously, if we aspire to have the maternal and infant mortality rates of a progressive, well-resourced 21st century society. Every baby’s life is worth saving, and if better antenatal care saves even a small number of babies every day then surely it is an investment worth making.
As for the NCT? I hope the faction arguing for a focus on maternal mental health wins out. Implicit judgements, pushing cultural agendas and evangelising certain methods over others at all costs – these things actively undermine the mental health of all parents. No parent is any good to their child if they are constantly overwrought with guilt, anxiety and a feeling that they failed.
Salvador Dali’s “The Persistance of Memory” – an apt depiction of time, grief brain, mourning and memory
Today it has been five months since Kaitlyn was born. The thought that has been on my mind a lot is how grief changes over time. In the very early days I heard it said an awful lot that “time heals all wounds.” I’m afraid that simply isn’t true. I’m curious as to where this banal expression has come from – even physically speaking, time doesn’t heal all wounds. Some people die from their wounds, some wounds never heal properly, they leave scar tissue, bodies can be broken or changed irreparably. Losing your child isn’t a simple skin wound, it’s a life altering injury. Yes, the most acute site stops bleeding quite so obviously and fleshes over a little, a fragile layer of skin knits together over the top. But what you’re left with is a completely altered life, reshaping yourself around your entirely altered reality. No amount of time ever heals that.
I think there are three issues with the sentiment. Firstly I have an obvious objection to the word “healing”; in all honesty it makes my teeth grind. Secondly the implication is that if you passively sit back and allow time to pass, you will automatically feel better. This simply isn’t true either. Truly facing up to a loss requires work, energy and input. Mourning is a very involved action or set of actions. In these last five months I have been accused of both immersing myself in my grief and running away from it. I don’t perceive either to be true. What looks like “immersing in grief” to some is simply processing a huge, life-changing loss; endlessly looking through photos, playing Kaitlyn’s playlists, holding the things in her memory box, reading every book on baby loss and grief that I can find…these are vital activities of mourning. In the beginning they needed to be done for every moment of every day. Now they need to be done for a small segment of each day, and if a day is skipped then that’s ok, so long as some recovery time is scheduled. Now, my brain can’t handle actively engaging in that sadness for every moment of the day, so other things are taken up – starting the bereavement group, meeting other mums in my position, working on the charity bears. This, in turn, is not running away from grief, this is giving my brain a healthy amount of relevant activity to do so that I don’t simply waste away in my house. Five months in, getting the balance between these two sides is absolutely crucial to my general ability to function. Thirdly it implies that your wound will heal and you’ll go back to being the person that you were before. I can’t see how that could ever happen. I will never again be able to care about some of the things I cared about before, nor do I think I will ever be able to take on as much as I did before Kaitlyn. Not every facet of my personality has gone or changed, but I am a long way from the person I used to be.
It’s fair to say that time does seem to make changes to the way my brain handles the trauma and the way I now access those memories has definitely changed. In the very earliest days and weeks, the pain was raw and constant and the memories, panic and despair flowed freely. Kaitlyn’s name was the first word on my lips, before I had fully awoken. I cried eleven hours a day. I thought of Kaitlyn in my sleep – not dreaming, I’ve had very few dreams of her – but thinking of her all night long. Have you ever had a time in your life when you’re so stressed out about something that you are actually mulling it over in your sleep? It was like that, for weeks and weeks on end. I couldn’t do anything, not one single thing. One day just before Christmas I had to make a two-hour journey by train to go to a counselling session, and I quite genuinely thought I was going to die. I almost just didn’t bother coming home, it was that horrible.
Now, life looks a little different again. On the surface we
are coping, which is a significant change from where we were, and one I never
thought would be possible. S is back at work four days a work. I’ve done two
keeping in touch days with plans for more. We care for M and our household is
running fine (I won’t lie, I haven’t rushed to resume housework duties, but I’m
doing plenty more than even two months ago). We have our projects running in
Kaitlyn’s name. We socialise a little, and I have made new friends as well, who
are a lifeline. We laugh and joke sometimes, though much less openly than
before. I can make train journeys again. If you don’t look too closely, we
appear like a normal little family going about our daily lives with a passable
amount of competence.
What is less easy to spot is the sheer amount of energy it
takes to operate. I feel like I used to be a nippy sports car with a 5-litre
engine; now I’m some sort of huge, underpowered Landrover running off a 1-litre
engine. What possessed me to attempt a car analogy there I’ll never know, but I
think it works. A single day at work is tiring enough to leave me in bed in
tears, and I haven’t even got any actual work to do yet. The only thing I’m fit
for after a kids’ party is coffee with a fellow loss mum or, yes, bed again.
Sudden anxiety attacks threaten in almost any social situation. Sudden bouts of
crying in the middle of seemingly unrelated conversations about nursery runs or
chores. A friend, who lost a baby many years ago, told me that over time you
get to a point where most of the time you can choose when to think about your
baby, rather than have memories or emotions engulf you without warning. I am
still nowhere near that point, but what has changed is that grief doesn’t
overwhelm every minute of the day and there are days when the grief beast
doesn’t rear its head at all. S and I had a conversation recently about what
those overwhelming spells of grief feel like when they do appear. S went for
the waves analogy – the waves can be outrun for a while, but they always catch
up in the end and wash over you, knocking you off your feet. I described a dark
shadow with sharp, jagged edges that sticks itself to my insides; in fact my
mind often goes to the Dementors in Harry Potter when I’m thinking about this.
S, who is basically a human encyclopedia, said our conversation reminded him of
a Japanese print, and he is right…
Katsushika Hokusai’s “Th Great Wave off Kanagawa” depcits a rogue wave 32-39m high. An overwhelming wave with sharp, jaggedy edges.
When I make time to sit and think about Kaitlyn, it takes no time at all for the wave to come crashing down. It’s all still there, under a very thin surface; the grief, shock and trauma are still very much there all the time. Always accompanied by love, but sometimes I wonder if people have a romanticised image of that, as if the love you feel for your child somehow outshines the blackness of their loss. This isn’t true either – the two exist side by side. My love for Kaitlyn could burn a hole in the very fabric of the universe, but it doesn’t diminish the awfulness of her death. The two sit beside each other and I carry both around inside all the time. Honestly, it’s exhausting. Then other times I can access the memories in a softer way; this is what time has enabled. There are times, just for a short second, when I can think about Kaitlyn with a smile, a tiny little flicker of candlelight before the wave comes crashing down.
The passage of time continues to boggle my mind. This last month has flown by with terrifying speed – it feels like just yesterday I was writing about our trip to the beach on Kaitlyn’s four-month birthday. Whole weeks slip by almost unnoticed, and yet I feel like I am constantly dragging my feet through the quicksand of time. It’s really weird operating at two speeds for such a long period, sometimes I have no idea what day it is or whether I’m coming or going. I realise that, somehow, I have actually handled quite a lot this last month and I hardly know how. Our new bereavement group is up and running, and the charitable memory bears set up with orders coming in. I’ve been to various bereavement meet ups, including an event in London with 25 people I’d never met. Two KIT days at work. Mother’s Day. An awards event for my old job, involving a night away in London. A week of caring for M with tonsillitis, including requisite number of traumatic waits in doctor’s waiting rooms; simply walking into our local doctor’s surgery is enough to make me want to hyperventilate. But of course I don’t want M to become scared of the surgery (goodness knows she spends enough time there!) so I gulp it down and try to keep calm. I look back through my calendar and see so many hospital check-ups, counselling appointments, lunches and coffees, kids’ parties, even the odd dinner or drinks in the evening. I am leading what could be described as a fairly full life, almost by accident. But it feels empty. Some things don’t – connections with trusted people never feel empty and are one of the things I hold on to tightly, even on the days I don’t feel like talking. But the big hole where Kaitlyn should be remains. Trying to at least partly fill that hole with the things we’re doing in Kaitlyn’s name, parenting her in this completely different way and making her footprint upon the world is the best that anyone can do in this situation, but nothing makes up for not being able to hold your baby in your arms, watch them learn to smile, see them follow you with their gaze, rock them to sleep. No matter what happens, how much time passes or how “well” we’re doing, life will always contain the deep, empty space meant for Kaitlyn.
Today, her fifth month, I have had the day to myself as S is at work and M at nursery. The first half was spent in bed, writing this blog, listening to Kaitlyn’s music. Then a visit to the crematorium and a walk. A donation in memory of Kaitlyn to Aching Arms, an absolutely wonderful charity for bereaved parents, and a request to have a bear in Kaitlyn’s name. A fairly quiet day of reflection and knowing that I wouldn’t change having met my perfect girl for all the world. Of course I would change our story, give it a happy ending and keep her here with me, I would give almost anything to make that happen. But I will always be glad to have carried Kaitlyn and have had the chance to bond with her, and I will love her forever, until I am reunited with her again.
Today is national siblings day, and I’ve been thinking all day about the beautiful bond between my two beautiful girls.
I couldn’t wait to raise sisters. I have a younger brother, who I love very dearly and is one of the best people I know. I love having a sibling, knowing there’s someone else who remembers our shared childhood, can laugh at the memories of family holidays and join me in teasing our parents. We had a very happy childhood which we both know is a privelege. I couldn’t wait for M to develop a sibling bond. She’s been ready for ages to be a big sister, she loves babies and I’ve only ever seen her be kind and gentle towards them. The fact that I was going to be raising two girls just added a different dimension to my own sibling experience.
Of course I know that I am probably rose-tinting this. I’m sure they would have pulled each other’s hair, stolen each other’s unicorns and fought over what to watch on the telly. Of course I wondered what the teenage years might bring – double doses of hormones and driving them around and partners that simply aren’t good enough for my daughters. But, much like parenting one child, those things would have been outweighed. Double doses of matching outfits (I’m sorry girls, that was definitely going to happen, no matter how out of character it might seem for Mummy!), hot chocolate and film night, ganging up on daddy. Shopping trips. Weddings. Supporting them through their own journeys to becoming mothers. I thank the universe every day that I have M to look forward to all of this with. But I couldn’t wait for the double dose.
Recently M went through a little phase of questioning whether she is a real sister, because Kaitlyn isn’t here with us. The truth is that M is not only a real sister, but the best big sister that I could have hoped for her to be. Sometimes I wonder if she struggles with the same things that I do – that Kaitlyn was only with us for such a short time that it’s difficult to hold onto the tangible memories of being with her. M says that she remembers meeting Kaitlyn in the hospital, but I know that memory won’t stay with her forever. So we looked at the photos, and I reminded M that of course she is a real sister, because she spoke to Kaitlyn every day inside my tummy and told Kaitlyn that she loved her. She talks about Kaitlyn every day, at home and at nursery, and she leaves pretty things on Kaitlyn’s cabinet for her to look at. M draws pictures for Kaitlyn. Every game we play or craft we make, there is a Kaitlyn space, a seat at the table, a butterfly made for Kaitlyn, pointing out Kaitlyn’s blue tits in Bird Bingo. More often than not these actions come from M. She is a real sister, a kind sister, a loving sister and I am honoured to have her creating Kaitlyn’s memory alongside me.
So many people told me that M was too young to understand what happened when Kaitlyn died. But she does understand. She grasped the enormity of the situation immediately. She was visibly sad. She knew straight away that Kaitlyn wasn’t coming to live with us, that she wouldn’t be coming back. Sometimes she goes quiet for a few days, which is almost always followed by days of coming to me, sad, tears in her eyes, asking me if I miss Kaitlyn. She roleplays all sorts of games where Kaitlyn is there; there’s always a sister in her games. There is really fantastic information available from Sands and Tommy’s about how to talk to children about the loss of a sibling, and we followed all of it. Child Bereavement UK don’t support children under the age of 4, again on the premise that they don’t understand much. In all honesty I wouldn’t have minded a visit from the health visitor after Kaitlyn was born, instead we were immediately discharged with no visit and not so much as a “sorry for your loss.” I think we are doing a decent job of supporting M’s understanding and emotions, but sometimes it’s comforting to check things out with a professional. After all, who knows when the effects of trauma and loss might one day come home to roost.
We use a lot of books to talk to M about her sister, and these are a few of our favourites:
The Playground in the Sky, provided by the charity Alfie’s Angels. This is the very first book we used to provide M with some kind of imagery for where Kaitlyn had gone. Kids need tangibles and this provided something for M that was in line with our own views on spirituality.
I Will Always Remember My Baby by Elizabeth Hutton. Another charity
production, provided by Kicks Count. Our copy was given to us by a
friend whose little girl sadly passed away in 2017. The book talks from a
boy called Jack’s perspective about his baby sibling dying and what
it’s like to feel confused and to see mummy and daddy sad, as well as
keeping memories of the baby.
A Star for Bobby by Helen Keenor, available from Sands. This beautiful
book uses nature to talk about death and tells the story of a little
bird family. Two of the chicks hatch healthily but little Bobby is born
very poorly and sadly dies. His siblings find the brightest star in the
sky and know that Bobby is always watching over them. I haven’t yet made
it through this book without crying. As M can’t yet read I change or
omit some of the words to fit our scenario; for example I tend not to
talk about graves as we don’t have one for Kaitlyn so M would struggle
to understand what that is.
The Invisible String by Patrice Karst. I adore this book; a friend kindly sent it to us for M very shortly after Kaitlyn died. It’s about how everyone in the world is connected to the people they love by invisble strings that are attached to our hearts. If you miss someone you pull on the invisible string and the other person will feel love tugging at their heart. Having some books that aren’t explicitly about death is very helpful I find, as I can talk to M about her feelings and her love for Kaitlyn without overloading her by always focussing on Kaitlyn’s death.
The Paper Dolls by Julia Donaldson. M got this book before Kaitlyn was even conceived, and I cried the first time I read it to her. A little girl makes paper dolls who have all sorts of adventures, until they are snipped by another child with a pair of scissors. The dolls go into the little girl’s memory, where they stay until the girl grows up and makes paper dolls with her own daughter. Being able to use a book that M already owned to open a conversation about Kaitlyn is also very useful and a bit more gentle on M.
Uni the Unicorn by Amy Rouse Rosenthal. This book has nothing to do with losing a sibling. It is about a unicorn who believes in the existence of little girls and a little girl who believes in the existence of unicorns. In our case it opens up conversations about what we believe and usually ends with a discussion about whether there are unicorns in the playground in the sky (my answer is always a firm yes, and of course Kaitlyn loves unicorns just like M does).
Books are an amazing way to open up all sorts of conversations with kids, even with a topic as difficult as death and losing a loved one. I hope this list can help anyone who finds themselves having to talk about an unexpected or out of order death with a young child.
All our relationships with Kaitlyn are being created in ways that we never could have imagined. S and I grieve every day for M’s loss of a sibling and every day we are so proud of the way she loves and cares for her sister and helps us to make Kaitlyn a central part of our family.
The Sands booklet “Supporting Children when a baby has died” can be found here.
The Tommy’s information on supporting siblings through a stillbirth can be found here.
I’ve been feeling very reflective this Mother’s Day, and a little calmer than I anticipated. I thought it would feel absolutely horrendous. As it was I had a huge emotional crash the day before, possibly in anticipation, so whilst I have missed Kaitlyn to the very core of my being, the day hasn’t been as unmanageable as it could have been. We went for a “day of two halves” approach. In the morning I got a bagel and coffee in bed and basically stayed there and hid for the first three hours of the day. I wrote to Kaitlyn and listened to her playlist. Initially I felt really sad because this was actually my first Mother’s Day with Kaitlyn; last year on Mother’s Day I didn’t know I was pregnant. But then I realised that of course Kaitlyn had been there – I had still been pregnant, even though I didn’t know yet!
M and S gave me beautiful cards, one made at nursery and the other a joint card from M and Kaitlyn. M gave me a little heart she had made at nursery and was very proud of, and a little silver moon necklace with a card that says “Love you to the moon and back.” On the afternoon that we spent together as a family of four in the hospital, we read “Guess How Much I Love You” to Kaitlyn, as it was a firm favourite of M’s when she was younger. I loved receiving the little necklace as a reminder of this.
In Kaitlyn’s letter I told her all about Mother’s Day and it got me reflecting. Even with the awful heartbreak we are living through, I am glad to have my wonderful little family. In a way I’ve never really needed Mother’s Day. My husband gives me time to look after myself throughout the year and always has, long before we started living with grief and all the extra time out that I now need. He’s always contributed an astounding amount to our setup and almost always made me feel valued for the things I do within our family. M is kind and caring every day. She’s always bringing me little presents that she finds. Every day she wipes my tears when I cry and cuddles up to me for TV time when I can’t face the world. Every day she talks about her sister with joy in her voice and leaves Kaitlyn lovely things to look at. She includes Kaitlyn in all aspects of her life. These are the things that bring me the greatest joy as a mother; the feel of M’s arms around my neck, the sound of her laughter and the love she has for her sister.
I don’t want to sound like I am completely down on Mother’s Day but I don’t really go in for it either; I’ve never been a fan of Hallmark Holidays. If people find joy in it then perhaps it can’t be that bad, but the problem is that these strange “celebratory” days bring so much pain to others. Social media doesn’t help, because no matter what people’s personal beliefs are about the value of these sorts of days, everyone merrily hops on Facebook anyway and puts up endless photos of their picture perfect day. I was guilty of it myself (although I was relieved on checking back through my Facebook to find that last Mother’s Day all I put up was a photo of me holding up the bottle of gin I was given, which I then didn’t drink because four days later I found out I was pregnant). On the flip side, the groups and charities I now follow have provided a lot of online support in the lead up to today, which at least helps you to feel like you’re not alone with your pain. The problem on Mother’s Day isn’t limited to social media – shops and businesses are the hardest to deal with, completely desperate for people to buy more endless stuff, to the point where you get email bombardment from every company you’ve ever made an online order from. I’ve already done one massive clearout of baby stuff on my social media and inbox which took two months, I didn’t have the energy to repeat it leading up to Mother’s Day. Sometimes even bereaved mothers need to pop to the shops and, oh look, there’s another vomit-inducing Mother’s Day display (the only ones I like centre around gin and now purple flowers). So maybe not a complete down with Mother’s Day, but perhaps a down with the commercial side. If we could ditch that bit, I could probably handle having to stay off social media for one day, just about.
One thing Mother’s Day has brought today is the gift of contact from the wonderful women in my life. Kind texts from lovely friends and messages from bereaved mums that I really haven’t known very long, wishing each other strength and love and gentle days. A thoughtful present from my next-door neighbour and dear friend, who has been such a wonderful support to me these last few months. A community of Instagram women that have been there in the lead up to today to support each other with kind words.
My gratitude for my family, the wonderful support from my friends; I so wish that I could say it takes the pain away. It doesn’t, because unfortunately grief doens’t work like that, nothing ever makes it better and it just hurts like hell all the time. But I have hugely appreciated feeling loved and cared for, in fact I would say it’s been essential for me today. It has put something a bit softer next to the jagged shape of grief; it’s still there, it still cuts away constantly at my insides, but there’s something else alongside it and that is a gift from my lovely friends and family. Days when you can’t see past the jaggedy grief-shape are the worst, and I’m glad that today hasn’t been one of those. A wise friend, who herself lost a baby, told me that it’s not the anniversaries and special days that floor her because those can be anticipated and mentally prepared for. To some extent I can see that as well; for me I seem to have the really awful grief attacks a day or two before the main event. It’s the every day randomness of grief attacks that are the hardest to handle as they tend to bite you at a moment’s notice.
The second half of the day was different. I got out of bed, showered, got M dressed and gave her lunch (my first parental actions of the day). We wanted to go somewhere quiet that wouldn’t be completely full of families and therefore possibly small babies. Somewhere outside, that held special meaning for Kaitlyn. We still don’t have a memorial anywhere for her, I’m in a bit of a mental tangle about what to do so we’re holding off making any decisions that can’t be reversed, until we can figure out what feels right. We decided to head to Lymington in the New Forest, where we could go and see the Isle of Wight coast. We went to the Isle of Wight for a long weekend when I was 33 weeks pregnant with Kaitlyn. It was a wonderful little holiday; S and I both look back on it as one of our happiest times. One morning we went for breakfast in Yarmouth and across the sea we could see Lymington, really not very far away. Today we didn’t have the energy or time to make a full trip to the Isle of Wight but it felt right to be somewhere where we could see that same little town and remember the four of us sitting just across the water for breakfast. I definitely feel like I’m on the other side of the water now, looking at a very different landscape from the one I used to be able to see.
We hadn’t intended to end up at the beach today but we picked up more things for Kaitlyn’s cabinet – M got a little carried away and picked up loads of shells (to several cries of “this one is purple for Kaitlyn!”) and stones. We brought them all home with us. I was taken by the sunlight bouncing off the water. That’s how I see Kaitlyn, as brilliant light dancing on the water; when the light has that certain quality that catches your breath, that’s how I know she is there with us.
So without a doubt the worst Mother’s Day I’ve ever had, but thankfully a kinder day than it could have been. M had fun, Kaitlyn was there, I got through. S had a full day of looking after his girls and, although he’s not the intended market for Mother’s Day, it’s been sad for him too, thinking of how we could and should have been spending our day today.
Yesterday was my first “keeping in touch” day at work. I was pretty nervous in advance and had no idea how I would handle being in professional mode all day. I didn’t know if I would be able to be interested in anything that didn’t relate to Kaitlyn, or to give anything my proper focus and attention. And of course the old classic; I was nervous so I didn’t sleep, which made me even more nervous that I wouldn’t be able to handle it.
Thankfully I work for an organisation full of compassionate people who have been wonderful to me these last few months. I have been in touch with my boss regularly and have met our CEO for coffee. My colleagues came to Kaitlyn’s funeral. These things have all helped enormously, most importantly because I haven’t felt cut off completely. And I haven’t felt pressured at all; arranging a KIT day was my suggestion, I’ve been able to come up with my own return to work plan in my own time and I’ll be supported to phase back in gently. Several of our Executive team have demonstrated that they understand there might be up days and down days, days when I cry and days when I have to leave early; that understanding has been very helpful to have. These are all things that employers can do to support people to come back to work following the death of their baby. Incidentally the provision for KIT days for women on maternity leave is very useful; it allowed me to test being back at work without forfeiting my right to remain on maternity leave for the twelve months.
But I was still nervous. Above all I wanted to avoid the awkward silences, or groups of people going quiet when I approached them. I didn’t want people to not know how to be around me. So the day before I sent an email round to the people I work with most closely, explaining that the thing I find hardest is when I have to go a whole day feeling like I can’t mention Kaitlyn, because that makes me feel fragmented, like I have to pretend to only be a part of who I am now. I asked people to talk about my daughter and gave them some ideas for things they could ask – for example about how my family are coping, how Kaitlyn’s funeral went and that it was ok to ask me how I am (people often worry it’s a stupid question, which in a way it is, but I don’t see it as one and I tend to take it as a conversation starter). I explained that I might cry or I might not cry, and that if I did it wouldn’t be anyone’s fault. I explained that I might laugh or look ok on the outside, but I’m never really ok on the inside, so my behaviour might sometimes seem all over the place. I received some lovely responses from colleagues over the afternoon and I got the sense that they appreciated my efforts to explain. They told me that it made them feel comfortable to approach me the next day, and that in turn made me feel more comfortable being there.
On the day itself I knew that I was going to the office in the morning and then to a management session in the afternoon. There were some practical issues that morning; we are completely out of practice at getting three of us out of the house in the morning and there was much tripping over each other and making each other late. I swiftly realised that in my postnatal state I still can’t fit into 95% of my work clothes; but I managed to cobble together an outfit that went with my purple boots, which I wear as a symbol of Kaitlyn. Once at work I intended to spend the morning saying hello and the afternoon hiding at the back…it was a KIT day after all, there’s very minimal work you can actually achieve on one standalone day, or so I thought! But of course there’s also never a slow day in my office. I ended up advising on various bits of work in the morning and helping to facilitate the management session in the afternoon; not quite the slow day I envisaged! But I think my boss was being quietly clever (she’s a bit like that, my boss). We’ve worked together for a while and she knows me well; I think she knew that I would actually cope better by feeling like an active and valued member of the team, and she gently encouraged me to have that role on the day whilst making it very clear that I was to raise the flag if it was getting too much. These things are entirely personal and it’s definitely best to be flexible around the needs and personality of the individual. For me it was a good strategy and worked well.
When I came home from work that day I had a real mix of emotions. I was absolutely exhausted, as if I’d been there a full week. I had forewarned S that I would most likely need to go and hide in bed and that’s exactly what I did – I’m still extra tired the next day and feeling very glad that I kept the rest of this week clear and quiet. I “enjoyed” my day at work – I use inverted commas because the word means something very different these days, not what it used to, a much more muted version. But I think it was a good thing to have done. This is of course accompanied by the ever-present, bone-crushing, tear-inducing guilt that I could have had any moments of happiness without my baby girl and this predictably had me in tears last night and this morning. I felt a little like my old self (cue more guilt) and restored just a glimmer of faith that my brain hasn’t shut down entirely. I even realised that the career woman in me is still in there somewhere, which has surprised me more than anything; I’m not sure whether to feel happy, guilty or like I need my sanity checking at this realisation. Maybe all of the above. My colleagues made me feel very valued, which made a huge difference.
I’ve made no secret of the fact that losing Kaitlyn has made me question my direction and purpose, including my job and my role in the health service, and I am not unique in this. Yesterday I spent the afternoon in a room of committed, compassionate professionals who work hard for the health service. That doesn’t mean there aren’t improvements to be made; the need to continuously improve what we do is part and parcel of working for a critical public service that play such a vital role in people’s lives. The environment is pressured, change is constant and so much, arguably too much, is driven by political direction and budgets. But there are good people working hard to do their best. At this stage, I can either be in and try to influence change or be out and lose all involvement. Maybe these feelings will change over time; working for one day is very different to turning up every day. Right now I feel like my role gives me opportunities to make a difference and I want to do what I can with these.
There are more KIT days planned over the next few weeks and a potential return to work planned. For now I will spend the rest of this week recovering and spending some time with Kaitlyn by visiting her special places, listening to her playlist and writing. For the future I will have to put careful strategies in place to ensure my ability to cope and enough time and space to stay connected to Kaitlyn once work becomes a permanent feature of life again.
Kaitlyn’s special hill – we drove up here today
The place we go to in our village to spend quiet time with Kaitlyn
Over the last couple of weeks I have been taking part in an online community where we write about loss using different daily prompts. One of the prompts was about writing from a colour. Kaitlyn’s colour is purple, set definitively by her sister. I wanted to share this today because it is focussed on creating Kaitlyn’s memory and presence in our everyday life. This can sometimes feel really challenging to do; how do you stay close to a person who existed and was here but whose personality you never really got to know? I have been using writing to help me with this and to keep me feeling close to Kaitlyn.
The Colour Purple
Your sister declared, with the true certainty of a three-year-old,
that your favourite colour is purple.
Now purple is all over our home. The bird house that M made for your special garden and painted purple and pink (her own favourite colour). The balloon she picked for you and left on your cabinet. The oversized hoodie I now hide in all the time.
It’s a deep, luxurious purple, the colour of royalty, of amethysts and chaorite, the colour of how precious you are. Of the wild, delicate violas found in the Spring and of M’s new favourite bird, the purple-crowned fairywren. It’s the colour of two young sisters playing unicorns and fairies, drawing rainbows and drinking Ribena. It is sweetness and richness and depth, it is warm blackberries on a cold winter day. It is the energy of red and the calmness of blue; it uplifts and calms all at once. It is sacred, graceful and feminine. It is the illustration of your wise and passionate spirit.
In the world of grief, the loss of the person that died is known as your “primary loss”. The void that is left by Kaitlyn no longer being here, not feeling her kick and wriggle, not being able to hold my little baby in my arms; that’s my primary loss. Bereaved people then also have a whole host of secondary losses to grieve, which touch every activity and every corner of your life. Secondary losses are absolutely huge and can leap out and grab you at any time, like a tangled mess of thorns forming a tight grip around your heart and resurfacing your rawest, deepest feelings of grief.
To try and make some sense of this I wrote a (most likely not exhaustive) list of my own secondary losses, in absolutely no order whatsoever:
Loss of seeing my child grow up and getting to know her personality. When a baby dies you don’t have fond memories of them as a person to draw on, your baby’s personality only exists in the form you create for it. This can be really difficult when what your heart craves the most is an ongoing connection with your child, but in order to have that you have to really search your memories and instincts to get a sense of what they could have been like.
Never knowing what colour Kaitlyn’s eyes were. I think about this a lot. Were they bright, sprakling blue like S’s and M’s, or dark brown like mine?
Loss of raising sisters, something I dreamed about since having M, in fact, and they had such a lovely age gap between them too. Attached to this are all the losses I feel for M, who I know feels the loss of her sister and goes through her own periods of sadness just as we do.
Loss of M’s innocence – sometimes I feel so angry at the universe for putting my child through this, forcing her to learn about death and sadness at such a young age. I feel sad that she’ll never remember what our family was like before we were touched by tragedy and loss.
Loss of watching Kaitlyn’s milestones – there are no first smiles, first words, first steps, first day at school. Watching other children her age doing those things will be both heartwarming and gutwrenching.
Loss of my own innocence and believing that every pregnancy results in a baby. Hitting 12 weeks, 20 weeks, third trimester…none of these pregnancy milestones makes a blind bit of difference to me now. I can no longer believe that getting to a certain point in pregnancy results in having a baby. I will always be that friend now that can’t really be truly happy for you in a relaxed, confident way until I know you have come home from the hospital with a living baby, and probably not even until after that. I know that “most” pregnancies and births do not end up like ours, but there’s a big difference between intellectually knowing a fact and putting your faith in it. The connection with other bereaved parents is a lifeline, but means I now know at least fifteen different ways that a baby can be lost during pregnancy, birth and early infancy. This is a terrifying thing for pregnant women to hear but I firmly believe that there are ways of talking more openly about this without scaring people out of their wits, and that this is something our society must get better at. Pregnancy is not all baby showers and nursery furniture, so why do we insist on talking about it like it is?
Loss of “carefreeness” – there will always be an underlying level of anxiety and panic-type feelings that will never go away, even when I’m smiling and participating.
Loss of finding any future children “easier” than the first. Parents of more than one living child often say that parenting a baby is easier second, third, fourth time around. That will never be my reality.
Loss of competence and ability to make decisions – I used to be a good multitasker, I could get a lot done in a short space of time and have always been confident in my ability to make decisions. Now I can mostly only focus on tasks related to Kaitlyn or M, I get overwhelmed in the supermarket, I can’t concentrate when S talks to me about household decisions. My loss of competence is probably the change about myself that I am finding hardest to come to terms with.
Loss of direction and certainty in what I do for a living – losing Kaitlyn has made me question all my priorities. Working for the NHS has always been an important part of my identity. As we worked through serious incident processes and reliving again and again what happened the weekend Kaitlyn was born, I have been forced to question whether my role really has the positive impact in the NHS that I want it to and what I can do about that.
Loss of memory – memory has never been a strong point of mine, but now if I don’t write something down immediately then it is very likely to be forgotten very quickly. I don’t remember what I’ve told to whom, I repeat myself incessantly and I forget things that people have told me. This, combined with the loss of competence, sometimes feels like my brain has actually broken.
Loss of feeling safe and ability to mentally manage risks – I’m now a nervous passenger and I panic when M and S travel somewhere without me. One doctor described Kaitlyn’s death as 1 in 1000. When you’ve been the 1 in 1000, suddenly the whole world is fraught with risk.
Loss of ability to raise M in a relaxed manner – linked to the above, I see risks to M everywhere. I can’t let her stay at grandparents’ overnight without me. In the middle of the day I’ll suddenly panic that something has happened at nursery. Sometimes I even hate watching her do very simple things like walk down stairs or sit on her kitchen stool. Helicopter parenting is generally frowned upon as a sub-optimal parenting approach, but unfortunately M is being subjected to a high level of it these days.
Loss of feeling a part of normal life – I’ve talked before about Glass Box Syndrome. This is the most intense manifestation of loss of normal life and although that has mostly passed, I still often feel separate from a group, like a Martian who has come to visit for the day.
Loss of inner joy, which has essentially been replaced by guilt and anxiety. A few days ago I had a short moment of thinking “this is lovely, I’m enjoying this walk in the sunshine with my husband.” This was immediately crushed by a thousand recriminations – how could you think that when your child has died? She’ll never get to enjoy anything. You should have protected her better…and down comes the avalanche of thoughts.
Loss of dreams, all the dreams you have for your child when you’re pregnant. Watching Kaitlyn grow and achieve her potential, build friendships, find love, live a happy and fulfilling life, maybe have her own family one day…all of that has gone forever.
Loss of interest in things I previously enjoyed – trivial things like TV, books, a glass of wine. Bigger things like readjusting to choir and singing lessons – I haven’t lost interest in the activities, they give me great comfort but also require more mental energy and drive just to get myself there. Summer is a big one – I’ve always loved summer, but Kaitlyn’s season is end of Autumn / early Winter, and so this is where I want to stay forever.
Loss of ability to handle unexpected situations – I’ve never really batted an eyelid if plans change last minute. Now I need to be able to picture in advance what I’m going into, so I can feel mentally strong enough.
Loss of faith in my body to function properly – I’ll never trust my body to be able to grow a baby again, and this then extends into everything else. If I can’t fulfil that natural function, what else can my body not do, what else is it not doing properly right now?
Loss of faith in my ability to protect my children – not only could I not protect Kaitlyn, but I don’t even know exactly when she died. There was no sixth sense, no feeling of foreboding, not for something that huge anyway. I had started to feel that things weren’t right but I had no idea that Kaitlyn might have died. You can’t protect your children from the world and all the awful things that happen, and that is a very hard reality for any parent to be faced with.
Loss of control – I am a control freak, and thought it had served me very well these last three decades. It turns out that I have always subconsciously believed that if I worked hard enough, made good decisions, studied hard at school, managed my career well, that things would generally be alright. Of course this is utter nonsense, but it’s one thing to know that intellectually and quite another to be slapped round the face by the wild unpredictability of life.
Loss of ability to connect with those who cannot understand my grief. Some people speak of “losing friends” during grief. I don’t really go in for losing friends – relationships can be elastic, sometimes you feel closer to people and sometimes there’s more of a distance. Certainly I’m finding it harder to put the effort into creating closeness when I don’t feel the other person understands my new reality. But that doesn’t equate to losing relationships forever, it’s more about surrounding myself with what I need to keep putting one foot in front of the other.
Loss of being able to take any future photos with Kaitlyn – this is a tough one. I adore our photos of Kaitlyn, but a couple of hundred photos have to get me through a lifetime. I have around 4,000 photos of M in three years, thanks to parenting in the era of the smartphone. A couple of hundred of my beautiful second daughter just don’t feel anywhere near enough; Kaitlyn will never grow in those photos, she remains a baby forever, no matter how much time passes.
Loss of uncomplicated happiness at seeing other people’s babies and watching their milestones. I still love my friends’ babies, and still feel happiness at watching them grow and seeing them healthy and having fun. It’s just that now it’s overlaid by sadness for Kaitlyn.
Loss of enjoying social occasions – one to one coffees with trusted friends in one of our houses with no sets of siblings around is a big fat yes. Anything else comes with varying levels of anxiety. Big group activities are the most daunting, but sometimes you want to be involved and not to keep missing social events. This leads to committing to something and then panicking as the time draws near and pulling out again. To anyone I have done this to / am yet to do this to, I am sorry for being a flaky friend / relative and I hope that one day this won’t be so challenging. In the meantime, please bear with me, forgive me if you can and please don’t stop inviting me.
Loss of self – I don’t really know who I am any more. If I had to do one of those ghastly elevator pitch exercises about myself, I have no idea what mine would say. “Broken person trying to figure out how to stick themselves back together” would be a good start. Everything is up in the air and up for grabs right now – spiritual beliefs, personality traits, everything really. Who knows, I might even find religion. Probably not…but honestly I feel like anything could happen right now.
Loss of confidence. I was a pretty self-assured person really, perhaps with a bit of imposter syndrome thrown in for good measure. It’s difficult to be self-assured though when you’re not quite sure who you are and a chunk of your soul has gone for good. All the foundations are shaken, the toy tower of blocks has been knocked over by a rampaging toddler and now the toddler is screaming in my ear and I have to rebuild the tower all over again, except I’ve forgotten how to build towers.
Loss of patience. Well alright, I never had oodles of this to start with. I seem to have an abundance of newfound patience for the trials and tribulations that come with parenting a toddler. The flip side is that I have lost all patience with life. A significant portion of my vision of a wonderful family of four has been shattered and can never be rebuilt. But if our family is ever to grow one day, this will take time and patience and inner resources I don’t even think I have. Where there should be a baby there is potentially a long road ahead, and honestly it’s difficult sometimes to have any patience for this concept.
Loss of joy in seasons – I mentioned summer – but there has always been a simple pleasure at watching winter turn to spring, the longer days of summer set in and the beauty of Autumn develop. Now the changing seasons just serve as a constant reminder of how much time has passed since I held my darling Kaitlyn in my arms and the fact that Kaitlyn never got to see any of the seasons herself. Sometimes there is comfort in knowing that each season brings me closer to spending eternity with her, but that’s the endless dichotomy of having a child in each world; thinking like that would, by definition, take me away from M. On the one hand whichever world I’m in, I get to spend it with one of my daughters. On the other hand is the rest of time on this Earth without one of my children, which no parent expects to go through.
Loss of pregnancy – this isn’t uncommon for mothers to feel once their baby is born, but pregnancy is usually replaced by having a baby to care for. It’s less of a loss and more of an evolution. Loss of pregnancy when your baby dies feels like a gaping black hole that will never be filled by anything including, I suspect, any future pregnancies.
Knowing that my little girl never got to see my face.She heard my voice, felt my love, heard my heartbeat, but she didn’t ever see my face or know what it felt like to have me hold her in my arms, snuggle close to her or kiss her on the nose, and I will never be able to show her those things during this life.
It’s been like a never-ending ride on a merry-go-round; just when you think you’ve made sense of what happened to your baby, another piece of information gets thrown in that blows up your understanding and you start right back from the start again. The truth is we won’t ever really know what happened to Kaitlyn, and that is extremely difficult for us to get our heads around. We’re both people who like answers; we’re set up to believe in the power of answers practically from birth. The whole education process primes you to solve problems by finding solutions, to provide the correct answer to any scenario. Then when the most important, devastating event happens, suddenly there are no answers any more. How can that be?
We did everything we possibly could to find out what happened to Kaitlyn. We consented to a post mortem examination. I provided ten vials of blood after giving birth, so that we could have every test possible. We asked for cyto-genetic tests and all histology work to be done on the placenta. Deciding on a post mortem was not done lightly and if I’m perfectly honest I got through that decision by simply not thinking too much about what the process would actually entail for my child. I explained my thinking to Kaitlyn as I held her in hospital, and told her that we were being driven by a need to understand what had happened for three reasons: to raise awareness of whatever issues had existed for Kaitlyn and to keep her memory alive; to find out whether there were any genetic issues that could cause harm to her sister; and to understand any risk factors for her potential siblings in the future. I thanked Kaitlyn for going through this for the sake of our whole family; I still thank her often for this.
There were two sources of information we needed to wait for; the post mortem report and the hospital’s Serious Incident Report. We received the post mortem report back on 13th January, just under two months after Kaitlyn died. In those two months I agonised over every single move I made in the nine months of my pregnancy. Literally everything. Every single bath, including the one I was advised to have on the day I was trying to go into hospital. I had used some lavender oil in a burner that week, could that be it? I went completely off alcohol this time around, which I hadn’t with M, but I had half a glass of wine at around week 25…could that have done it? Was it because of that week that I had kept rolling onto my back in my sleep? Did my commute to London harm Kaitlyn somehow, cause too much stress, was there too much pollution in the London air? Should I have worked part time instead of full time hours? Was it because M had climbed on my back that time, or that time in the first trimester when she slipped and her elbow caught me in the stomach as I reached to catch her? You get the idea but I could go on, and on, and on. I would wake up in a cold sweat at 3am, having remembered some other tiny detail from pregnancy and then rumimate on it for hours until exhaustion took over again.
Then there were the big questions. Had I given Kaitlyn an infection? Had her movements been reduced the whole time and I just hadn’t noticed, because she always moved more than M anyway? What would have happened if I’d just taken myself off to hospital on the Thursday night, Friday, early Saturday morning…
The post mortem directed us towards a potential answer. Fetal Vascular Malperfusion. Small blood clots had formed on Kaitlyn’s side of the placenta that may or may not have affected her growth. All the experts that have worked with us have agreed that Kaitlyn was too small for her gestational age and for us as parents, especially given M’s birth weight of 7lb 1oz, just two days later in her gestation. Other than these facts, nothing else was found. Kaitlyn was absolutely perfect, all her organs perfectly formed, no heart defects, no structural issues with her brain, lungs, kidneys, nothing at all. The post mortem found “no evidence of chronic placenta failure” and stated an “acute mode of death.” We glossed over these terms and latched onto Fetal Vascular Malperfusion; like all good 21st century parents we googled it when we got home, and convinced ourselves that this was the cause.
Then came the Serious Incident report. Forty-four pages of reliving every appointment of my pregnancy, reading all my conversation transcripts from the Saturday morning, going back in slow motion through the events in the Day Assessment Unit that day. I had to read it four times over the course of ten days to fully understand and process what it said, because of course there were no clear conclusions. There were things that were sub-optimal, things that could have been done better, new clinical information, none of which was deemed to have contributed to Kaitlyn’s death. I can honestly say that this fortnight completely and totally ruined me and several times I nearly gave up, rolled over and accepted the inevitable, that we would just never know and that the system was too complex and difficult to work throuh. I say this with over ten years’ experience in the health service; several times I spared a thought for people who are not used to reading SI reports, don’t know what all the parts of the system are and how they interrelate and don’t have contacts they can draw on for help. I like to think I’m fairly intelligent and articulate, but at first I couldn’t make head nor tail of the pages in front of me; partly because they simply weren’t easy to follow, and of course because of the emotional trauma of reliving everything through written words.
I was angry in those two weeks. I mean so, so angry; my anger seeped out of me and into every interaction, every text message, everything I did. Anger that my daughter had died, at the universe, at the processes that took so long to deliver information and then made you work so hard to access it. At the NHS, my professional home. At myself, and this was scariest of all; the anger I had for myself and my failure to act was almost too much to handle. I was told by some that I was too angry, I was distracting from my grief, I had to let go of the anger and accept that sometimes awful things just happen. I’m afraid I found this quite upsetting. You see, anger is an integral, vital part of grief; asking a bereaved parent not to be angry is like asking them not to breathe in and out. I’m sure you’d be pretty angry too if your child died. It’s an emotion we fear and can’t handle in our society…and let’s keep in mind that I wasn’t excatly going about the place smashing up cars or drinking myself into oblivion (in fact I have really not touched much alcohol in 14 months). If you are ever in a position of having to help a friend grieving the loss of a baby, and I hope you never are, then please try not to tell them how to feel or grieve. Even if you think it is better for them to simply accept that bad things happen, that is a process that needs to come from the bereaved person themselves. It can’t be shortcut or imposed from another person. I’m still not there, I’m not sure I ever will be, but if I do ever get there it will have to come from me.
The SI process culminated in a four hour meeting at the hospital with an expert in fetal medicine and the Assistant Director of Midwifery – both very compassionate people, who put our needs ahead of everything else that morning. Both absolutely passionate about delivering excellent services, and that radiated from them. Whatever I might think about the events around Kaitlyn’s death and the investigation report, I cannot fault the way we have been engaged and worked with through this process. Our hospital’s maternity service included us as the family in the report process, and I hope that every hospital can learn to do the same, as I know this is not currently the case. I’ll be honest and say that at this stage we don’t have complete agreement on all the issue and conclusions, but I didn’t really expect anything different.
At that point we were left with some pieces of information that didn’t fit together into a story. We had a bunch of mistmatching puzzle pieces from different jigsaws. We knew there were clots in the placenta, but we didn’t know that they definitely affected Kaitlyn because there was no evidence of chronic placental failure. We knew she was small, but we didn’t know why. We knew she didn’t die very long at all before she was born, though we’ll never know exactly when. We thought there was an “acute event”, but we didn’t know what it was and the clinicians seemed to disagree on whether this was even the case. We’ll never know whether a feto-maternal heamorrhage could be to blame because the test to find this out was overlooked and not taken. We know the hospital definitely shouldn’t have phoned me up and sent me home on the day Kaitlyn was born, but without turning back time we can’t be completely certain what difference that might have made. I cannot completely let go of the thought that it could have made a difference.
We also know I contracted cytomegalovirus (CMV) at some point in my pregnancy because I had antibodies at the end but not at the start. CMV is carried predominantly by toddlers and is often asymptomatic in adults, in fact most of us will have had various strains of it in our own childhoods and likely again in adulthood if we have young children at home. If a pregnant woman does contract it then there is often no indictaion, there’s no treatment and in the vast majority of cases it doesn’t affect the baby, although in the minority of cases it can cause very serious complications. This new knowledge reopened my deepest fear – that I had given Kaitlyn an infection. Except I hadn’t, because there were absolutely no markers of infection in Kaitlyn, nor any markers in the placenta. So although it seems I had CMV at some point, it never passed to Kaitlyn. This didn’t stop me panicking though. M had been ill so many times in my pregnancy, including with chicken pox. Of course we’re careful, of course we washed our hands every five minutes, of course we did’t share drinks. But find me a parent who hasn’t been slobbered, coughed and sneezed on by their poorly toddler. There is no such thing as absolute perfection in this area, we all do our best but I do constantly question whether my best was good enough. Perhaps we should have washed the towels every single day? Never gone swimming? In any case, at this stage the clinical experts seem unanimously assured that CMV had nothing to do with what happened to Kaitlyn.
We know that a lot of my 3am fears from those very early weeks are unfounded. I wrote a long list of these fears and gave them to my consultant, who was kind enough to work through and disregard every single one of them, with explanations as to why. It doesn’t stop the crippling guilt from creeping in every now and then, but it has helped me not to ruminate on those things every moment of the day, and on my good days to believe that having a bath in week 40 does not cause a baby to die. Probably. Maybe. And one very important thing we now know; it was not a genetic issue, so there is no reason at this stage to believe that M is at increased risk of something that could have affected Kaitlyn. But I have also learnt to be very circumspect in how I talk about these kinds of things and to never take anything for granted. The thought of anything happening to M is another anxiety-fuelled obsession that keeps me awake at 3am.
Finally, we contacted specialists from another hospital and through the charity Tommy’s, who arranged a consultation for us with one of the UK’s leading experts and researchers into stillbirth. These yielded more possible interpretations of what might have happened to Kaitlyn. One is to do with the physiological changes that occur in the last few weeks of pregnancy, which are significant; different hormones are secreted, ligaments soften, muscles change in the mother, circulation changes in the mother and baby. There is a school of thought that says some babies, and indeed placentas, don’t cope very well with these changes. It’s possible that the placenta didn’t cope with the end stage of pregnancy, restricting Kaitlyn’s supply of nutrients and oxygen and causing a lack of oxygen supply during the long latent phase of labour we then went through. The other interpretation is that the umbilical cord was suppressed towards the end of pregnancy – this could have been chronic (i.e. happening over a longer period) or acute (a serious suppresion that happened over a much shorter period). My own guess would be more towards chronic, as Kaitlyn’s growth had been restricted, but I’m very, very far from being any kind of expert (despite having learnt a huge amount in the last four months I am still at least one medical degree short!). Umbilical cord suppression would also explain why there was evidence of Fetal Vascular Malperfusion on Kaitlyn’s side of the placenta. Both specialists thought that the presence of Cytomegalovirus was entirely incidental – it was there, but it had nothing to do with what happened to Kaitlyn and it never found its way to her. Interestingly both theories led to very similar advice for if we were ever to consider having more children in the future. It was helpful to have both of these conversations, to try and make some sense of what had up until then been snippets of information with no connection that we could see.
So where do we go from here? Honestly, I don’t know. I have worked again and again through the information we have been given, to try and give us a story that we can understand. The human brain craves stories, needs narratives that makes sense, and my brain is trying to create that. But in reality I have to come to terms with the fact that we’ll never know for certain. In my own way, and in my own time. I will continue to research some of the things we’ve found out. I believe much better antenatal care is needed in the UK, and that the culture around “low risk” pregnancy needs to change. We need to make better use of the technology at our disposal. We need to get better at talking about risk; fear of scaring pregnant women is not a reason to pretend risk doesn’t exist. There must be ways of talking about it without tipping into scaremongering; we need to strike a balance. It’s difficult because sometimes our brains work to protect us from anxiety; I can well imagine someone reading this post and thinking “I don’t have a toddler, so I’m safe” or “she must have had some underlying health issue, it won’t happen to me.” But this isn’t the case – 9 months of antenatal care and every post-birth test imaginable has confirmed that I don’t have a sniff of an underlying health problem, neither do I smoke, drink much alcohol or caffeine (not since my youth!) nor have a high BMI. When it comes to pregnancy and childbirth, risk simply exists and cannot be magicked away through surface level positivity or denial. Whilst the NCT has done a lot of very good work, I think the way they educate expecting families needs more balance, though this may depend on direct experience with a course or tutor; I have believed this to be the case since 2015, even after a “textbook” experience with M. In 2017 1 in every 225 births ended in a stillbirth. On raising this one response we were given was that the UK reports stillbirths better than other countries do and we use the term “stillbirth” to apply to earlier gestations than in other countries, which accounts at least in part for our worse rates. I can certainly see how this could be the case, and if it is then it is to be applauded; the first step in tackling any problem is to surface it, and proper reporting does just that. But that’s not the end of the conversation, it’s just the very beginning; we can’t simply sit back and say “our problem isn’t really worse, it’s just better reported.”
I am sorry to my baby girl that a definitive answer couldn’t be found but I am so grateful to the two specialists this week who pieced the story together for us a little better. Above all I am sorry that my body couldn’t protect her properly. I will never really understand what happened to my poor Kaitlyn, but I know that I have thrown and am still throwing everything I have into trying to find out, every fibre of my being and every ounce of energy and brain power that I can muster. At the very, very least, Kaitlyn deserves that.
To learn more about stillbirth in the UK, the Tommy’s website is a mine of reliable information and statistics.
To find out more about CMV, a good place to start is this information sheet produced by the charity CMV Action.
The World Health Organisation published a new document today looking at stillbirth, which can be found here.
A Keepsake for Kaitlyn 