My story was originally published in August 2016 on Rock My Family: http://www.rockmyfamily.co.uk/neo-natal-story-claire/
Here it is again as an introduction:
My name is Claire and I live near Leeds with my husband Andrew and our rescue dog Humphrey. We adopted him but in the end he rescued us. In September 2015 we had what the professionals call “a poor obstetric outcome:” our daughter Alexandra died after 36 hours of life.
Andrew and I met in 2009 at a jamboree called Wings in Berkshire. He volunteers for the Scout Association and I volunteer for Girlguiding. Our lives followed the usual pattern after that: moved to Leeds; bought a house; got engaged; got married; adopted Humphrey and I was pregnant with our first and very planned baby in 2015. I’ve always thought I achieved life goals at sensible times in my life: married at 28 and first baby at 30.
Andrew and I were extremely lucky in that I got pregnant within about 3 months of trying. I read up a bit and started folic acid and vitamin D as soon as I came off contraception and Humphrey’s walks kept us both fit! My ridiculous planning meant my due date was after 1st September so they wouldn’t be the youngest in the year and before December (my birthday is in December and it sucks!) My pregnancy followed the usual pattern. Morning sickness was horrible and it felt like the world’s worst hangover without the benefit of a cracking night out the night before but I felt I got off lightly compared to some people. Luckily I was only physically sick twice during this period. The hilarious symptom was that my boobs went rock hard and stayed upright when lying down. Needless to say Andrew thought this was fabulous.
Once this phase had finished we relaxed a little – we’re very pragmatic people and never fully took anything for granted. Andrew’s Mum researched infertility; caesareans etc. from a sociological point of view and also volunteered for the NCT so we were well aware of the early miscarriage rates. As the pregnancy went on the more confident we felt. My pregnancy plodded along (all tests and scans were fine) until about 6 months when my hips/pelvis just “went”; then came carpal tunnel syndrome and waking up with claws (quickly got wrist splints) and finally horrendous acid reflux which resulted in me being sick all the time including at work – not a good look. The final 3 months were so uncomfortable and I just wanted to get the show on the road and start raising my child. We didn’t find out what we were having so I had something to aim for in labour. I was convinced we were having a boy as I was in so much pain! We attended NCT classes and honestly I can’t remember if anything was mentioned about the stats to do with the risk about going over your due date. I came out of NCT absolutely terrified of being induced and therefore ending up in the operating theatre. I was open to all forms of pain relief but the thought of a needle going into my spine frightened the beejesus out of me.
I finished work mid-August with my 3 due dates being 13-17 Sept. I tried everything to get labour going – I spent hours bouncing on that dam exercise ball. My dates came and went. At 40 weeks Alexandra’s head wasn’t engaged so I couldn’t have a sweep; I had the sweep at 41 weeks and was booked in for induction the following week. The sweep was uncomfortable but manageable – I couldn’t see how other people thought it was painful!
Alexandra’s movements had all been pretty regular. She was normally very active during the afternoon when I was at work and then when I started maternity leave she switched to being a gymnast in the evening with lots gentle stretching and a few hefty boots during the day. We were booked in for induction on the Tuesday morning (29th Sept). Sunday evening she was really going for it but by Monday evening I noticed she hadn’t moved as much so we called maternity assessment and off we went to the hospital. From here our entire world turned upside down.
I can’t remember the names of all the wards I was taken to. (I could look them up in my investigation report but I obviously don’t like reading that too much). I was attached to a heart rate monitor and asked to press a button whenever I felt baby move. At first the midwives weren’t too worried as the heart rate seemed normal. It was actually a 6th sense from a midwife that felt something wasn’t right. That heart rate couldn’t match with what I wasn’t feeling. More and more senior people came to see us until the most beautiful doctor I’ve ever seen appeared at the end of my bed (even Andrew was stunned!) He gave me another sweep and tried to break my waters– this time it was painful. He said my body was nowhere near ready to go into labour and I was rushed into theatre. My fears about a needle in my spine were unfounded – I barely felt a thing. I nearly had to be put to sleep as they were worried about it not working quick enough. In the end my legs were flipped in the air when I was on the bed to get the drugs to flow up and work quicker. The surgeons got to work and Alexandra was out within a matter of minutes and she was born at 01:42am weighing an impressive 9lbs 15oz.
The next thing I can remember after Andrew telling me that we had a girl is hearing “1,2,3” “adrenalin” and seeing more and more people running into the theatre standing over our girl fighting for her life. The staff then asked if we had a name for her and we said “Alexandra.” I could see Andrew crying at my head and I just thought “that’s it; we’ve lost her”. I knew she was without a heartbeat for a long time as I know it takes roughly 20 minutes to be put back together after a c section. In the end we were told she was without a heartbeat for 18 minutes and they were very worried about her brain.
Early the following morning my parents had arrived and we were told to get Andrew’s parents there that day not the day after that they originally had planned. We didn’t tell them exactly what had happened as they had a 7 hour drive from Aberdeen. Andrew’s sister and husband drove down from Glasgow.
Due to the emergency nature of my c section there wasn’t time or anyone available to take a photo of Alexandra for me so I had to go on trust that I was seeing my baby when I was wheeled on to the NICU. I couldn’t believe she had ever fitted inside me – I’m only 5’2! I was glad she had a full head of hair – all that gaviscon had a reason! We were told that she had to rally over the next 24 hours to have any hope of a meaningful recovery.
I spent what seemed like hours staring at Alexandra’s face to see who she looked like. The general consensus was that her gorgeous perma-frown was me. She got my huge feet. Before she had seizures her reflexes were so strong. At one point I’d got a hand cramp and I couldn’t get these tiny fingers to let my finger go. When Andrew blew gently in her face she frowned even more. Andrew would tickle her feet and she would move them away.
By Wednesday morning she hadn’t made anywhere near the recovery that she needed to. It took 3 different kinds of medication to stop her seizures and she had bag after bag of blood products as she wasn’t clotting properly. The staff were extra kind and threw the rule book out of the window and allowed by cousins and my auntie and uncle to be with us too.
You could see how frustrated the doctors were on the NICU – they don’t go to work to lose babies. Alexandra’s injuries didn’t match with simply being without a heartbeat and therefore oxygen for 18 minutes. Something else had to have been going on in the days and weeks before she was born. We were told that although her liver and kidneys and other organs could recover her brain wouldn’t. It was very unlikely that she would make it to school age or for her to touch, hear, see, smell or even taste. At that point we thought “is that a life – if you can’t interact with the world?” We then had to discuss moving her from intensive to supportive care.
We decided we couldn’t keep prolonging the inevitable and took her off intensive care. We then got to cuddle her on a cushion with the ventilator still attached and take photos of her with her entire family. In the end we had made the right decision as she was starting to slip away before the ventilator was taken out. Once this was done she was brought through to us in the family room. I cuddled her as she passed away in my arms. Once a doctor had confirmed that there was no heartbeat our families left us to spend some time alone with her. She was wrapped in a big fluffy white blanket so I didn’t notice how cold she was until we had to take her back to the NICU. During our time alone with her we got to take more photos, impressions of her hands and feet and inkless imprints too. My Auntie had bought her a Ralph Lauren baby grow so my daughter spent most of her life in designer gear! We changed her into another baby grow so we could keep it. I can’t really express what it took for me to walk from the family room down the corridor to the NICU and have to put her into the cot. I never wanted to let her go.
We got to go home the next day: Thursday. Humphrey was over the moon to see us. From there we had to register Alexandra’s birth and death which meant we had to go back to the ward to collect the medical death certificate in order to do this. We then organised her funeral. We picked music that represented us; Andrew chose “Pavane pour une infante défunte” by Ravel and I chose “Smile” by Michael Jackson. I read in a SANDs book to try and choose music that wouldn’t normally be played on the radio so you’re not caught out when you’re not expecting it. We decided on a cremation so that if we ever moved she could come with us. Somehow I read a eulogy I’d written and Andrew and his sister both read poems. We had a civil celebrant do the service as faith is something I struggle with. Andrew would describe himself as a devout atheist and for now the experience of losing my Grandparents and my daughter in the space of 3 months has put me there too. I fail to see how a benevolent being was looking over me.
The anger I still feel regarding the whole situation is gut wrenching; it’s visceral and it’s scary. We referred ourselves very quickly to Martin House Children’s Hospice for their new community counselling service and it’s helping. Friends have since had their babies and the ones that live near me are having girls which is unbelievably hard. I can be relieved that they’ve arrived and are safe but that’s as far as I can go. I can only concentrate on how unfair it is that mine isn’t here. I did everything right – why did I have to be that statistic?
I’ve become an expert at hiding posts and unfollowing people on Facebook. Anyone who’s had a baby in the last year or is a serial selfie with baby offender is unfollowed. I don’t need to see their happy bubble every time I log on. The Facebook Motherhood challenge was torture.
I’m happy to report that I’m 27 weeks pregnant with my second baby. A lot of people said we were so brave with dealing what happened to Alexandra. I didn’t feel very brave then and I still don’t. I’ve got a different midwife who seems pretty switched on and she’s offering me all sorts of extra mental health type classes and referrals – I’m going to take everything that’s offered as my brain is not going to tell me when I need help. Stress is a very strange beast. I’m also under consultant led care at the hospital with a consultant that we met when we were in with Alexandra. So far the difference in care this time is breath taking. We’ve had 6 scans so far and everything is fine. Our consultant had a good analogy for us: “it’s like turning the volume up” – the stress will get worse the closer we get to the due date. I’ll be having a planned c section at 38 weeks as I and they don’t want me to get anywhere near the due date and have similar problems again. We unfortunately know that not everyone gets to keep their baby. We’re living day to day and week to week. Every Friday is another week down. I’m hopeful that I get to keep this baby but I will forever wish that we have both babies. I’m certainly not fixed either – I miss Alexandra every second of every day.
During our time in the hospital we had asked about organ donation and we were extremely relieved to be told that although there was too much damage to most of her organs that they could use her heart tissue and her heart valves. We have recently found out that her tissue is kept in storage for up to 10 years until it’s needed and 2 of her heart valves have gone to Great Ormond Street Hospital (only the best for my girl!) and 1 has already been used.
Oh and Humphrey is still the same: as long as he gets kibbles, walks and cuddles he’s happy. If it wasn’t for him we wouldn’t be anyway near “with it.”