The very, very, beginning

Scarlett was born at ten past ten in the morning by caesarean section three and a half weeks early.   The moment I saw her, as they lifted her up over the sheet and I reached out and touched her tiny leg, I knew I was in in trouble. Crazy, mad, deep in love, trouble.

They took her to the other side of the room to clean and weigh her and Simon went with her so she wasn’t on her own. She came back to me wrapped in a blanket with a little pink hat on. I felt like I already knew her, we’d already had such a journey together. I felt like I’d seen her face a million times before. She was perfect.

It had been a difficult pregnancy. They call it morning sickness but I call it all bloody day, all bloody night sickness. I struggled to cope with anything that didn’t involve lying on the sofa eating crisps. I had previously had an ectopic pregnancy and so spent the first few weeks terrified, but a six and then twelve week scan allayed any fears I had. We chose not to have the nuchal translucency (NT) screening offered to all pregnant woman at twelve weeks which gives a probability score of the likelihood the baby will have Down syndrome. For Simon the decision was an instinctive one, he simply didn’t want or need to have it.   The decision wasn’t so straight forward for me; I researched the screening process and the results it gave, discussed it with friends and family and subjected Simon to endless scenarios of “how would we feel about this result?”, “how would we feel about that result?”. For me, in the end, it came down to this: the NT screening does not give a definitive diagnosis of Down syndrome, it simply gives a probability. We may have been given a 1:1,000,000 or a 1:70 or a 1:4 but it would never give us an actual answer. So for an Accountant who prefers to deal in absolutes, the test seemed meaningless to me.

With hindsight I went to our twenty week scan naively. I was excited to see our baby again, we were pretty sure she was a girl and had been referring to her as “her” for weeks, but I was keen to know for sure…I wanted to start shopping! It didn’t really occur to me that there would be a problem, that it would be anything other than another lovely chance to see our girl. But this scan felt different, I watched the sonographers face rather than the screen. Something was wrong.

Ventricularmegaly. It took me hours of practice to learn how to pronounce this. Ven-tric-ular-meg-aly. It felt important to be able to correctly say it. It basically means big ventricles. The little spaces in Scarlett’s brain containing fluid which should measure 10mm measured 11.5mm; classified as ‘mild ventricularmegaly’. The Doctor explained that we would need regular scans to check if the ‘vents’ were getting bigger and putting pressure on the brain and that while in most cases big vents didn’t mean anything in some cases it could be an indicator of a disability or learning delay.   I was devastated. I cried for days, I could barely get out of bed. And then I started researching. I read everything I could find on the condition and learned that there is a possible, but unproven, link to Down syndrome. Perhaps it was instinct, I don’t know, but I had a feeling and even discussed this possibility with a Paediatric Doctor – my “feeling” without a clear diagnosis, however, was not considered enough to go on so my concern was quickly dismissed. We were offered an amniocentesis, where a needle is inserted into the tummy to test for chromosomal conditions, but we declined. The idea of a giant belly needle (I’m sure the reality was nothing like this) terrified me, as did the risk of miscarriage at 1%.

Scarlett’s early arrival was not linked to the brain condition, but because we were having so many scans to monitor this, another issue was picked up at around 32 weeks that the umbilical cord was not working efficiently. We were told that we would now need to have weekly scans and that I should keep my hospital bag with me as they would be making a decision each week if Scarlett was safer “in or out”.

I panicked. My first thought was that we didn’t have a pram. Or cot sheets. And the nursery wasn’t finished. And that I had absolutely no idea how to look after a baby and I thought I had a few more weeks to read the baby books and suddenly I might only have a few more days…. How do you change a nappy?!?  Our trip to Mothercare that Saturday was like a mad episode of Supermarket Sweep, I was frantically grabbing stuff off shelves and throwing them into the basket shouting at the sales assistant “the baby might be coming next week!”.  We chose our pram because, well, it had four wheels and space for a baby and would probably be ok … that night Simon showed me how to change a nappy with our newly bought tiny baby nappies and a teddy bear. I felt a little calmer. If she came early, we were ready. Kind of.

Our final scan was a Monday. It was time. Scarlett would be safer out now as the cord was not working well enough. Time to choose; a caesarean section later that day or be induced. The choice was mine. With hindsight, knowing what I know now, I should have opted for the C Section. But I still had that romantic idealistic notion that all first time Mothers have of how I wanted my birth to be. I had been practicing my breathing and had my hypno-birthing CD in my bag. My birthing ball was in the car and I had spent several hour working on my birth plan. My birth would be natural, with my choice of music playing in the background. Simon would help with the delivery and Scarlett would be immediately placed on my chest for skin to skin contact and feeding. It would be beautiful and my hair and makeup would be in place for the photos afterwards….

Four days, three rounds of induction and very brutal procedure from a robust midwife later and I was walking into theatre with Simon for a C Section. It wasn’t the birth that I had planned but it was beautiful. Simon was with me, holding my hand, reassuring me and making me laugh. The Doctor who had carried out all our scans and knew the journey we had been on the last few months delivered Scarlett. It was calm, relaxed and we have some wonderful photos and memories of those first precious minutes with Scarlett.

I will always be grateful for how the team in the room behaved. While they must have all known immediately that Scarlett had Down syndrome, not a word was said and the mood was happy and excited. I have heard terrible stories of Mothers being given the diagnosis while still on the delivery table or the atmosphere being subdued or sad. But our team celebrated the birth of our beautiful daughter with us, they congratulated us, took pictures and allowed us to enjoy the moment.

The events of the rest of the day are hazy in my mind but there are two things I remember very clearly. First that when Scarlett was born it did not enter my head that she may have Down syndrome or any condition or disability for that matter. Which is strange given the pregnancy that I had just had, the scans, the worry, the daily discussions Simon and I had about how we felt about our baby potentially being born with a disability. The moment I saw her I just forgot it all. She was here and she was perfect. My only instinct was to feed her and keep her close. I also remember being given the diagnosis later that day. The Doctor who talked to us was wonderful and did her very best to follow the “tell it right” protocol. She first asked who we thought Scarlett looked like. And without hesitation I said “oh she looks exactly like her Dad when he was a baby! Simon’s a quarter Chinese and I can see this in Scarlett – she has beautiful almond eyes and a broad bridge to her nose”. I was absolutely right, of course, Scarlett is very like her Daddy especially around the eyes and nose. But to the Doctor, I suppose, I was describing Scarlett’s Down syndrome features and just not realising it. The Doctor gently guided us toward understanding that she thought Scarlett may have Down syndrome, she explained about the single crease across Scarlett’s palm and smaller low set ears. I asked her if she was ever wrong and she answered that she would be very surprised if she was but that they would confirm with a blood test. She then left us to be alone for a while.

We had a little cry for a minute or so, we hugged and then we looked at our daughter and knew very quickly that while this was a lot to take in and there would certainly be some challenges ahead and, yes, we were pretty scared, we could handle this. We loved her. We loved each other. Scarlett was perfect and whatever the future may hold, our immediate priority was to feed her, keep her warm and love her. And that’s what we did.

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