My name is Claire and I live in Leeds with my husband Andrew and our rescue dog Humphrey. In September 2015 we had what the professionals call “a poor obstetric outcome” when our first daughter, Alexandra, died after roughly 36 hours of life.
Andrew and I were extremely lucky in that I fell pregnant within about 3 months of trying. 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 three 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!
I finished work mid-August, with my three due dates being 13-17 September. I tried everything to get labour going – I spent hours bouncing on that damn 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.
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 September at 42 weeks). On the 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 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 sixth 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 twenty 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.
By Wednesday morning she hadn’t made anywhere near the recovery that she needed to. It took three different kinds of medication to stop her seizures, and she had bag after bag of blood products as she wasn’t clotting properly. It was really at that point that we gave up hope of any sort of “normal” outcome. We knew that Alexandra was very likely to be extremely ill and severely disabled, if she lived that long. We had a discussion later on that morning with the consultant about what to do. He told us that from the evidence they had seen from previous babies in a similar situation to Alexandra, it was very unlikely she would be able to see, to hear, to taste, to touch or to smell. Essentially she would be utterly unaware of the world around her.
I have always believed that life is the sum total of your experiences, so could you even classify it as life if you had no awareness of anything? It did bring in dark thoughts to both of us about how she would be unable to tell us if she was scared, or in pain. We’d have no way of telling her that we loved her. It was a dreadful discussion.
We agreed, at that stage, that we wanted to move from an intensive care plan to a supportive care plan. This meant that rather than doing everything possible to keep Alexandra alive, if she decided that she wanted to go, we would let her.
We are both passionate believers in organ donation and it was very important that her little life contribute some good to the world, even if she was only going to be here for a very short period of time. At the end of this discussion, we knew that it was not going to be a case of if Alexandra died, but when. As a result of the damage her organs sustained, we were only able to donate her heart valves for transplant and heart tissue for research. We know that one heart valve has been used at Great Ormond Street Hospital.
She passed away on the Wednesday evening, having decided that she wasn’t going to fight it. Death is a strange thing to witness, there were no dramatics; she just gradually became weaker and weaker before finally passing away. I was recently half watching BBC Breakfast and it had a piece about babies donating organs. It said that only 40 babies have donated organs in the last decade; so our Alexandra is 1 of 40 and I’m unbelievably proud of her.
In October 2016, after an incredibly physically easier but immensely stressful pregnancy, we welcomed our second daughter Ophelia. Her name in Greek means “to heal”.
What have I learnt?
This club sucks, but there are so many wonderful people to talk to who get it.
Being Mum to two girls, but physically raising one is very odd. I try to keep a balance between the two and I’m always conscious of trying to give them equal time; just like any other Mum of two really. We’ve raised almost £10,000 in Alexandra’s memory for a variety of charities: the LGI NICU, SANDs, Martin House Children’s Hospice, Tommy’s and Beyond Bea Charity.
Some people will surprise you with their support; others will disappoint; such is the nature of life. To paraphrase “Everybody’s Free to Wear Sunscreen”: But a precious few, who should hold on
My stubbornness has its uses and forces me to continue; nothing will keep me down permanently; I will try and try to get back up again.
Asking for help is ok, and I should do this more often.
Surviving the loss of a baby is possible: it is possible to laugh, smile and enjoy life again. It’s one step at a time.
Instagram – @afteralexandra36