is the day I have learnt to celebrate a child’s birthday without the child.
This is something, I still cannot get my brain around. I had
a baby on this day, I had emergency surgery on this day, my body knows that I had
a baby, but my brain can’t seem to adjust that the baby who was meant to live a
full and healthy life died.
I have a seven-year-old, but she didn’t grow she didn’t
leave the hospital. She is forever 5 weeks, but I still should have had a seven-year-old.
How can anyone get used to that?
Time has stopped, raced forward and slowed down all at once.
As we entered this year, it has felt different, I have felt
pissed at the whole situation, pissed that I am not the person I was before,
pissed at my self for feeling like I hate my daughter. Pissed that no matter
what I do, I will always be a mother to a dead child. It felt like I woke up
after seven years and everything is different.
I can ignore her, ignore the situation, I could stop talking
about her; but none of it would change the outcome. I would still be a mum to a
When I decided to walk away from her, from everything about her
to turn and run as far away as I could, I hate being a bereaved mum and I feel
I wished that I had never met her.
This year I felt beaten by the whole thought that this is
our life. I was fully expecting to be ‘better’. This is something I am now
learning to deal with.
I was reminded that no matter what I do she will always be our daughter. So rather than run or hate her I need to find a sense of being happy within the situation which has been given – I certainly didn’t choose any of this. I want to make sense of her death; this year I have been given the confidence to push the support group I set up three years ago, it is bloody hard work – but rather than hating her for making us bereaved parents, blaming her for ruining our lives; I am going to learn to love her again, to build a legacy for her and her siblings because they are a massive part of the service we are building and trying to achieve.
I really have had such a tug of war (love) between the life I
had imagined and the life we have, I am grateful to the life we have, but I also
would have preferred not to have a lifetime of pain – as would many other
families who have lost their child. T
I don’t quite know
how it is seven years.
This year she would have been doing her year two SATS tests, it is another moment where there will be a number missing in the statistics, a missing child at the table, but there will be no absence reported.
The tooth fairy will never
I will never have her
first tooth stashed away not knowing what on earth I am going to do with it.
She will never need a
magic kiss for the knee she grazed running too far ahead.
Or chose a story to
read in bed
I will never know the
thing she would have liked, or the hobbies she would have chosen.
Would she have been a
majorette like the rest of her siblings or wanted to do something completely
There will always be
a seven-year-old shaped hole an unoccupied space, but in the secrecy that nobody
will ever notice that empty chair, or missing friend from the classroom.
Or a hand that isn’t
And still the biggest
thing that I wish I had known is the colour of her eyes.
I hate not knowing
such an important part of someone’s facial feature.
I have a seven-year-old, I would love to have gotten to know her.
I remember the first time I saw 2 lines on a pregnancy test. We had only been trying for a couple of months and I couldn’t believe it would happen so fast. I was scared but so happy and never for a second thought about anything going wrong so 2 weeks later when I went to A+E with red blood I was shocked to be told I had miscarried. I felt like my whole world had broken and remember just wanting to hide away.
5 weeks later I went to ASDA to buy cough medicine and something told me to take a pregnancy test. I did it right there in the public toilets and was so shocked to see 2 lines again. Part of me worried if was false and from the miscarriage even though I’d had negative tests during it. Right from the start Maison gave me a reason, he was our first little rainbow baby and I honestly thought nothing would go wrong again once we got past 20 weeks.
I had a pretty rough pregnancy involving Hyperemesis Gravidarum, gestational diabetes, SPD and pre-eclampsia so i was induced at 37 weeks. I delivered a very healthy baby boy on 6th August 2012. Except for a bit of reflux Maison was a perfect baby. He was happy and cheeky and we were so in love. He loved people and every day with him was a new adventure. I finally felt like I had found my purpose in life being Maison’s mother.
7th March 2013
The 7th March 2013 started like any other day. I went into Maison’s bedroom to wake him up as we were late getting up. I remember going through the door and straight away seeing Maison lying there with bright orange nappy-sacks over his face. There was also a handful around the top of his head. I screamed and the sound of my voice still hunts me. From that moment it’s all a painful blur. I try and remember but it makes me feel sick and dizzy, I feel like I can’t breathe and like I have an actual hole in my chest.
I do remember that I called 999 but I couldn’t do the CPR so my husband Martyn had to take over. I ran into the kitchen and called my Mom who raced over. The next moment my house was full of paramedics desperately trying to save my son’s life. But i knew he was gone, i knew it was too late. Maison was taken to hospital and i went with him in the ambulance. Martyn was kept behind by the police to be questioned.
During this they took items of Maison’s and lots of photos. This meant i was alone in a+e watching a team of strangers desperately trying to save my child’s life. It mean I was alone when they gave me that look and said ‘I’m sorry we can’t do anymore’ it felt like my whole world came crashing down. The pain of being told your baby has died is indescribable and nothing ever fills the hole they leave.
I always thought I could imagine what it felt like to have your child die but honestly it is nothing like it. It is something you will never heal from, it becomes part of you and from that moment you change, you become a different person. We got to have Maison blessed in the hospital and have a final hold. Our family all came so they could say their goodbyes. Walking out of the hospital without him was the hardest thing i have ever had to do in my life.
I was surprised by all the people who walked out my life when Maison died. People I thought I could count on suddenly wasn’t there when I needed them. I have never felt so alone. I tried different online support but felt I didn’t fit into any of the categories. Maison was too old to be classes as a neonatal death, there was a reason so it wasn’t due to SIDS, there was no illness to blame. His death was just an unlucky accident. Luckily I “bumped” into a bunch of lovely moms online on Babycentre.
They will never know how much they helped me, it was nice to talk to other people who just got it. I know even know years late I can write down how I’m feeling and they will understand. They won’t just reply telling me to speak to a doctor because they know they I can’t be “fixed”
A few months after Maison died I found out that he wasn’t alone. i heard of another baby who died from suffocating on a nappy-sack so decided to start a Facebook page called Maison’s Memory. We researched and found there were many other babies who had died but there wasn’t much warning on them. Nappy-sacks are usually brightly coloured and make a rustling sound so babies find them very attractive. They are made of thin material which easily covers the face and can be sucked down the airways. Nappy-sacks aren’t required by law to have safety holes like carrier bags so are more dangerous.
I started working with RoSPA on their nappy sack campaign and did lots of interviews to tell people about Maison’s story. I faced a lot of backlash from people who left nasty comments and for a while they upset me. They left me wondering if i really was to blame for Maison’s death? In a way they pushed me to do more and educate more people. If we saved 1 life it was worth the nasty comments. While working with RoSPA i was awarded their archangel award 2016 and got to tell Maison’s story to HRH Prince Andrew. I also got to attend a garden party at Buckingham Palace.
Maison’s Memory has now started the journey to become a registered charity. I’ve planned family fun days and online market nights over the last few months raising money to provide free first aid courses to families. I believe all parents and family members should be trained in the basics of CPR. I also focus massively on home dangers for under 5’s so that another family doesn’t face the heartbreak mine has. I want to run at least one course a month and in the future i hope we can do courses for children and courses with creche services so everyone can learn how to save lives.
Thank you Beth for taking part in Melody and Me’s Infant Loss Project
This was first featured on Still Standing Magazine.
“I have five children; but I parent four. One of my children died.”
I can see the look that changes your face in an instant, you don’t realise you’re doing it. But I can see it, the twist of pain; the looks of discomfort as you’re unsure of how I am going to take this conversation.
You tell me you’re honoured about hearing of her, our little
girl who didn’t make it, but in the same breath you tell me that is hurts your
heart; and you often don’t know what to say. That by me telling you makes me
instantly a different person. You look at me in a completely different way,
your eyes look heavy I can hear that deep breath you thought was silent,
because you fear that maybe I will share too much or maybe even infect you somehow.
Then I find myself saying sorry. Sorry for upsetting you,
sorry for mentioning her, sorry for not keeping her a secret; sorry for having
a daughter who died.
“I don’t understand these people who keep talking about IT,
who feel the need to share their losses, why don’t they just get on with it- I
did.” I remain quiet, because I fear that I am different, for not being over it
as quickly as the next person; I question am I even coping the way I am meant
Am I ill for talking about HER? Should I be moved on? How am
I supposed to just forget her?
I’m sorry for bringing her up again. I’m sorry for grieving
too long. I’m sorry I am not grieving the right way. I am sorry for talking
about my daughter who died.
I watch as the children move from one year to another,
school holidays, new uniforms, new school year. Another year where we are minus
one; another year of never knowing who she could have been. No friends, no clubs,
no teams. No school reports.
I’m sorry that I am glad my living children are growing up
and that I don’t want them to stop growing. I’m sorry that just sometimes I
feel sad that one of our children isn’t moving up.
I am sorry.
As I hear time and time again the wonderful work the health
care professionals do to provide care. I am sorry that not all are the same. I
am sorry it feels me with a deep and heavy sadness when places get praise. I
just wish our baby could have been one of them too. I wish her heart hadn’t
stopped. I wish everything was different. I wish I could have done more to save
I could have left her in the past.
I could have felt the shame of having a baby who died.
There isn’t a day goes
by that we don’t think of you, especially recently.
Mummy might not have
told you, because it terrified her, but I was ill some months ago, admitted to hospital
and everything. It was the same illness
that took you from us, Sepsis. I got it
in my leg, no thanks to the NHS, and nearly lost it, potentially even
Being in that hospital
brought so many bad things to the front, having to stay in the same place that
we lost you. Especially for nine
days! Whenever I went for a walk,
especially down to the food court, I’d always find myself looking over at the
restaurant where me and mummy used to have a dinner or sandwich. At one point, I stopped and just stood and
stared in the direction of the NICU, where you lived.
It screwed me up when
they informed me the day I was discharged that it had been Sepsis, the very
thing that took you from us.
It was almost like that
day we lost you.
I think at that point I
hated them, I can’t explain why as such.
But everything flooded
back, seeing you on that bed that last time, the staff upset, the doctors
apologising. I had nightmares when we
got home, couldn’t face sleeping in case I saw that again without the control
of being awake.
And I hated the NHS for
what they’ve done, to me, to you.
The same goddamn
I hated that place,
because the ward I was on was so close to yours. And then they told me it was Sepsis that I
had, and I nearly lost my leg, or worse!
I felt numb like the day after we lost you, barely able to speak, just
wanted to get out of that place. Mummy
drove me home, and my head was filled with all those images of you.
Since then, all of
those feelings I had have come back to the fore. All those times I got pushed to the side
because I was “just a dad”, and ignored, and organisations not wanting to help
me. I hated it, and myself, and now it’s
all out again.
Since then I haven’t
been able to sleep properly, desperate for this illness to go do one.
And then Kelsi was ill,
and blue-lighted to hospital recently.
I’ve taken a week off work, and realised I really don’t want to go
back. I’d rather be at home with mummy
and your siblings than go back to that place, to any job involving cooking, but
nobody else will have me, and we don’t have the money to do that.
I’ve reached the stage of heavy, few days to go until her birthday.
I re-enter the days as if it were yesterday.
I know many people will wonder why I still struggle all these years on, or why I still speak about her, about where we’ve come from.
Because I love her.
Because she is my daughter. She may not have been here for long but she was ours. It is hard to miss someone, who we barely got to know. But I do miss her. Of course I miss who she would have become.
I cannot imagine never being able to speak about any of my children, their school day, their activities, their loves, their hates…..so to not speak about Melody, for me is just not an option. I don’t talk about her as often as I did in the beginning, more because I worry about everyone else. But because there are still times where it hurts like hell. I’m in a place where I can enjoy life, but this of course doesn’t mean I am over her, or time has healed me…I’ve just learned to live with what has been dealt to me.
I love social media, I love the “On This Day” Function, reminds me of so many wonderful things we have done as a family. But then it hits me with memories of our girl.
Today for instance..
Another trip to the ward for monitoring, I was hoping I would be in and out in no time! I’d been advised that I would need to allow half a day for the appointment, however when I arrived the HCA said that it wouldn’t take that long and would only be more like an hour. So I text mother who had given me a lift to say I wouldn’t be long and could she turn back round.
I sat waited while my BP, urine and bloods were done. When a doctor came and stood in front of me to tell me there would be a possibility of delivery in two weeks!!!
TWO WEEKS????? WHAT THE HELL!!
A lovely midwife walks in where I burst into tears, she pulls the curtains around to explain that I would need two steroid injections 24 hours apart to help mature baby girl’s lungs for early delivery. Even the lovely midwife began to cry…bless her…..
(Excerpt from Mayflower’s Rainbow)
With a Social Media update…
One steroid jab down another to go, relieved it was in one’s leg and not me arse! Though have a dead leg now! Fingers Crossed they’ll work nicely! X
Comments showed how scared we were. We were desperate for those two weeks, we wanted longer.
But there was no way I was leaving that hospital…
I am scared I am going to forget her.
The “bad” days are now very few and far between. I speak about her not as often as I did.
I am scared that the memory of her is so distant, I wonder at times, whether she did happen. Whether she did exist?
For me to speak about her, helps me to feel less scared, that one day I’ll wake up and won’t remember her whole life.
Molly and Grace’s Stories. Massive Perivillous Fibrinoid Deposition (MPFD).
We found out we were pregnant with Molly in mid-December 2010. We were delighted but couldn’t help worry as we had miscarried just 2 months earlier. A scan at 6 weeks showed a little bean, with a flickering heartbeat. We were in love! I spent the next few weeks mostly being sick. The ‘morning’ sickness continued morning, noon and night. At 16 weeks I had a small bleed. A trip to the maternity unit showed I had a cervical erosion which we were told was nothing to worry about.
We also had the chance to hear baby’s heartbeat through the doppler. In the next few weeks, I started feeling movement. Just before 20 weeks, I had another bleed. Again a trip to the hospital confirmed the erosion was the cause of the bleeding and we had another opportunity to hear the heartbeat. At 21 weeks, we headed to the hospital for our routine scan. We were shown into the usual room but this time the sonographer did not turn the screen round. All was quiet and I knew something was wrong. She took my hand and said ‘I’m sorry but there is no heartbeat’. I will never forget that moment. She went to get someone to come and confirm that our baby had died. The next couple of days are a blur. I was given tablets to take and told to come back in 2 days to be induced. We arrived back at the hospital a couple of days later and were given a side room in the labour ward. All around us we could hear the cries of healthy newborns. I was given medication to induce labour and the contractions started soon after. That whole day is a blur to me. Molly was born at 21 weeks on 14th April 2011 at 9:04pm after 11 hours of labour. I didn’t look straight away. The midwife took her away and brought her back to us all clean and wrapped up. I was scared to hold her, scared to touch her. But she was perfection in miniature and so beautiful.
We held her and spoke to her. I was scared to unwrap her and look at her properly. We spent a few hours with her then the midwife took her away. I was in complete shock. I don’t think I would have survived had it not been for my husband. Leaving the hospital the next day, without Molly, was one of the hardest and most horrendous things I have ever done. Walking away that day was the worst part of the whole experience. We buried our beautiful girl 2 weeks later on a warm, sunny morning. I have regrets… …that I didn’t look at her feet, that I didn’t hold her for long enough… I just didn’t know what we were allowed to do and I didn’t have the presence of mind to ask. I look at her footprints and I wish I had looked at her tiny, perfect feet. July brought results of the tests carried out on my placenta. Molly had been perfect, my body let her down. Placental results showed that she had died due to a very rare condition called Massive Perivillous Fibrinoid Deposition (MPFD). This basically meant that fibroids and clots had formed on the placenta, gradually taking over until it was no longer fit for purpose and unable to support a growing baby. Consultants put in place a plan for the future: daily aspirin tablets and daily self-administered heparin injections. It was hoped that this combination would stop clots forming and keep the blood moving through the cord.
We went on to have another early miscarriage at the end of July 2011 and then a pregnancy test on New Year’s Eve confirmed that we were pregnant for the fourth time and, with a treatment plan in place, we were hoping that finally this pregnancy would give us our take home baby. At night, I was taking my aspirin, folic acid and vitamin D. Also I began injecting the heparin. After a small bleed, we were scanned at 10 weeks for reassurance and all was well. The 12 week scan came around quickly and we were relieved to see our baby waving at us and measuring perfectly for dates.
We were delighted but still very apprehensive. Our next scan was booked in for 15 weeks. At this point, the baby was measuring slightly behind but the sonographer wasn’t worried and said it was normal to be out by a couple of days. We went round to see the consultant to make sure all was going well with the medication. He offered extra scans for reassurance and we went 2 days later for the first of those scans. A registrar scanned us on a very old machine. She was concerned about the fluid level but, after looking at our scan photos from the hospital she said they were the same and not to worry about it if the hospital hadn’t mentioned it. A few days later, I had a major bleed. We went to the hospital. A doppler let us hear a nice strong heartbeat and put my mind at rest a bit. A scan was also arranged for the coming Wednesday when I would be 16 weeks. This was when our world started to crumble all over again. The scan on Wednesday showed that there was no amniotic fluid and the blood flow through the cord (EDF) was absent. We were devastated and could not believe that it was happening all over again. The doctors advised us that our baby would die within days and that they would scan us weekly until the inevitable happened. We met with our consultant the following day. He thought it was the same thing again and told us that this was the first time the hospital had dealt with anyone with MPFD. In fact, they hadn’t heard of it before and the treatment we were on had been their best guess. The 17 week scan showed baby still had a strong heartbeat although growth had majorly slowed down. However, some small pockets of fluid had appeared and EDF was present. This gave us a tiny sliver of hope and the doctors doubled the amount of clexane I was taking. I also began taking steroids to see if it would help halt the damage to the placenta. It looked like the condition which had taken Molly from us had returned with a vengeance. By 18 weeks, my bump was popping out and growing well, I was still being sick. The scan showed our little star was continuing to fight hard. At 20 weeks our little one was still fighting. EDF was present but growth was minimal. We spent the weekend on the coast, remembering Molly on her first birthday and anniversary. We had such a horrendous sense of déjà vu as it was all happening at the same time of year again. At 21 weeks the heartbeat was still there but the EDF was now absent again. I was advised to stop all the medication. I woke up a few days later on the 2nd of May and knew our little one was gone. I had movement the night before but I knew when I woke up that something was wrong. A scan later that morning confirmed our little one had died. I was booked in for induction 2 days later.
4th May 2012, 22 weeks pregnant: after 6 hours of labour, Grace came silently into the world at 3:15pm in the same room where Molly had been born. She weighed exactly the same as Molly, perfection in miniature. She looked so serious and deep in thought. She would have been our little thinker. I wasn’t so scared this time. I held her. I looked at every part of her, including her tiny feet. I didn’t want the same regrets as I had the last time. We cuddled her for hours. The next day, we said our goodbyes. It took us a long time to walk away. Once again, I found this the hardest thing to do. There is nothing worse than walking away and leaving your child behind. It is the most horrendous thing I have ever experienced.
Tests on the placenta confirmed that, like Molly, the placenta was again attacked due to the condition Massive Perivillous Fibrinoid Deposition. They were still not 100% certain of what causes the MPFD to happen, possibly an alloimmune response, possibly an as-yet undiagnosed thrombophilia issue. They did not commit to either school of thought. What they did say was that the condition was aggressive and recurrent and they were struggling to find anyone else with as severe a condition. We were a unique oddity.
So… they agreed to the treatment plan we had researched that had been successful for people with a similar condition as long as we went into it with eyes open and accept that we were now sailing in unchartered waters with no guarantees. The treatment would include aspirin, high dose folic acid, heparin, steroids and Intralipids.
I became pregnant for the 5th time in Autumn 2012. All was going well. Various early scans had shown a little bean, with a heartbeat, developing well. A scan at 11 weeks showed the heartbeat had stopped. This had been so completely unexpected and I felt completely numb. If anything, I expected the bad news to come as we approached 20 weeks and beyond. I had been taking all my myriad of medications, focusing on getting to that point and then taking it from there. I had injected myself with heparin over 100 times. I had taken over 200 steroid tablets as well as the daily aspirin tablets. I had two intralipid infusions. Folic acid tablets, vitamin D tablets, pregnancy multi-vitamins. All to no avail. Placental tests came back to show that MPFD had returned with a vengeance despite the extensive treatment plan. Even if the pregnancy had continued beyond 11 weeks, the placenta would never have lasted. We were told that I would highly likely never carry a living child to term and we should start to look into other ways of having a family.
Following our 5th loss, our consultant mentioned surrogacy to us. He felt it would be a good idea for us as our babies were perfectly healthy, it was just my body that was the issue. My sister offered to be our surrogate and kept offering until we decided we would give it a go. We used our own embryos and my sister was the oven! We became parents to a healthy baby girl in Spring 2014 and we feel so blessed.
MPFD did not make an appearance at all. Surrogacy was such a positive experience for us. My sister was amazing – she would phone us to come up when baby was moving around so that we could feel her moving. We did worry about how she would feel when baby arrived but the fact that the baby was biologically ours and not hers made that easier for her. We there in theatre when our little one arrived by c-section at 37 weeks. We all cried. My sister felt it was such a different experience to having her own. She said she loved her immediately but didn’t feel the rush of intense love she had experienced when her own daughter had been born. I think this was a relief for us both as we had both been worrying about it. Cara knows she grew in her auntie’s tummy because mine didn’t work. It’s just the way it is. What a fab auntie she has! So MPFD is a condition I still research and blog about. It is so rare, it is important to me that others find some support. When I initially googled it, all that appeared was a bunch of medical papers that made no sense to me. I want others to be able to find a human face to this and also so have instant access to research and treatment plans which I have collated along with another mum who has the same condition. I also volunteer with SANDS Lothians – a fantastic charity who were a light for us during very dark times. Despite everything, we are blessed. Every day our little girl brings us such joy – we are so lucky to have her.
You can read more about Massive Perivillous Fibrinoid Deposition here if you are interested:
For many around the world, the concept of a shield is the idea of knights in massive armour, carrying shields with the chivalric coats of arms. They protect the wielder from harm whilst the other arm carries a sword, mace, hammer, etc. It can be made from anything from cardboard to Vibranium, and can be small and light, or heavy and huge. They are made for all sorts of reasons, and for all sorts of missions, quests, but above all: removable protection.
It is armour to protect us, but we put it down; we store it when we’re safe.
For child loss dads we never want to put it away, in fact we carry it all the time, ready to protect ourselves.
When my wife was pregnant with our first, Melody, I had already experienced that loss, having lost Sophie my first daughter to stillbirth. When she first told me she was pregnant I was terrified, we had had two miscarriages the previous year, and my biggest worry was that I’d never get to be called “Daddy”, I’d never hear that word that turns any man into jellied mush… So I carried that shield with my family crest on, and protected.
My wife became seriously ill with HG, and I was terrified –terrified that events would happen all over again. But Melody was born; born early, admittedly, but she was bloody strong, a fighter like the Scottish warriors of old. She fought hard too, coming off her ventilator in less than a day. So the shield got put down.
And then the nightmare happened again: she died, and I held her in my arms like I did Sophie, watching her pass.
So the shield came back up, reinforced.
And then my wife was pregnant again; this time we made it, despite my wife suffering horribly again, and then again with our last. I sat helpless, terrified, as all dads do whilst their partners/wives suffer through it. All we can do is bring them inside the shield.
To put it in another context, it’s like Battlestar Galactica: we’re the Galactica and its famous Vyper squadrons, valiantly defending the Colonial Fleet from the Cylons, fighting against seemingly impossible odds.
I conceived my youngest, Alex when Teddy (my eldest) was still very young – there were only 16 months between them when Alex was born. Teddy was born 6 weeks early via emergency c-section but after careful consultation with midwives and a consultant, I chose to deliver Alex via VBAC. The whole way through my pregnancy with him I was terrified he’d be born prematurely too. I feel like I held my breath until we reached the 37-week mark. At 37 weeks and 4 days, I went into labour naturally.
All went well and I quickly made it to the magically 10cm dilated mark. At that point midwives were worried about baby’s heartbeat and called for a doctor. He wanted to try forceps but we rushed to theatre in case. Three attempts at a forceps delivery failed and an emergency c-section was performed.
By the time Alex was pulled out of me, my uterus had ruptured and Alex had been starved of oxygen for an unknown amount of time. But too long. He slipped into the world silent and still. The doctors managed to resuscitate him and rushed him away. He was the transferred to another hospital for cooling treatment to try to prevent secondary brain damage whilst the doctor worked hard to rectify the mess of my insides.
I joined my son that evening, having waited a day for a bed. Tests showed a complete lack of brain stem activity despite my desperate pleas and prayers. The first night of his life he crashed but doctors brought him back as I tried to rush my bruised and broken body down to the NICU. His body showed the trauma he’d been through and we signed a DNR to prevent further trauma. Life support machines kept my son alive for 3 days, but on his fourth day we made the heartbreaking decision to turn them off.
I found out I was pregnant with twins in April 2017. I was scanned a lot with it being a multiple pregnancy, but was actually signed off as low risk at 16/17 weeks pregnant. We had had growth scans, listened to their hearts and everything seemed healthy. Then at my 20 weeks scan they discovered twin 2 had a problem with his heart.
We were fast-tracked to be scanned at fetal medicine and cardiologists from other hospitals came too. They confirmed he had HLHS at this point. Meaning half his heart didn’t work properly, it was under developed (the left side that pumped oxygenated blood around the body).
From this point we were scanned every week and every week it was like they found another problem. We were advised to terminate because they were really concerned with me progressing with this pregnancy. After reading everything we decided we would go ahead with the pregnancy to give our twin 1, Dylan, the best chance at surviving. We would be monitored and obviously we had to Take our pregnancy day by day.
We had a plan for every situation should the babies have had to be delivered at different points. Towards the end of my pregnancy we had the plan of delivering the babies and then if all was well being transported to the hospice to receive end of life care for Danyl. We were heart broken that we were planning this but we knew the team very well by this point. Then at one of my last scans we were told Danyl was doing so well we may be able to take him home for a few weeks. At this point I asked again if surgery would be an option for us (even though I knew he would never be cured of his defects, surgery would have been palliative too) again we were told that they were very worried about our baby and he wasn’t even here yet.
So we went home to get our heads around the fact we may get to bring our baby home. It was at this point I let my mam and husband try and sort out things for the babies, I hadn’t allowed myself to buy them a single thing because we Genuinely didn’t know if anybody would survive. Anyway fast forward for their birth 12/10/2017 and they were both born and doing well. We were kept in for 5 days. It was so weird getting to know your babies and trying to be happy and grateful for them both arriving but signing DNR forms and knowing one would die.
It was really surreal. It was so scary bringing them both home. Looking at Danyl, he didn’t look poorly. He didn’t need any medical intervention etc and people were genuinely shocked when they saw him. Danyl was at home with us for a year and 10 days. Some days were a real struggle looking after 3 babies under 2 and 1 being seriously ill. We were prepped to go back to the hospice at any point and were told what changes to look for. Changes in feeding, nappy output, visually etc. None of these changes actually came and the day he died was actually just a normal day.
He had a routine check the day before and everything was his normal. Looking back I’m pleased I didn’t see a change. He didn’t look different, he didn’t need any of the drugs we were given etc. He just looked like he always did and he just fell asleep. We are now dealing with the ‘what happens next’ Oliver my eldest receives play therapy from the hospice and we are continuing with counselling etc.
HLHS – Hypoplastic Left Heart Syndrome is a birth defect, which affects normal blood flow through the heart. This is found during pregnancy when the left side of the heart is found not to be forming correctly.