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It wasn’t supposed to be like this

At the age of 19 and mid-way through my degree in Law, I gave birth to my first daughter. It’s fair to say that she wasn’t the most planned baby, but I never regretted it for an instant. The sheer joy and delight she brought immediately to my life made me certain that one-day I would want another child. Possibly more than one. I am one of three and experience naturally leads to assumption. However, whilst I may not have been certain about the number of children, what I did know for absolutely sure was that I didn’t want another one any time soon. A delight she may have been, but my eldest daughter was also a terrific shock as a newborn. And as a one year old. And as a two year old. And – you get my drift. It wasn’t until she was four and a half that I felt remotely brave enough to consider a second child. And when I say second ‘child’, I mean that I wanted a second daughter. I desperately wanted another girl. I hadn’t been bothered the first time around, but then I had always known that she was a ‘she’. The scan hadn’t shown anything but I just had a gut instinct. I bought only pink clothes and we didn’t consider any boys names. Or, at least, I didn’t. There was no point. A late scan at 40 weeks showed that I was indeed expecting a girl. How could I have known? I couldn’t. But I did.

There was no such certainty with my second pregnancy. In any sense. From the second I had a positive test I was gripped by an irrational fear that I would miscarry. It consumed me. I spent my days taking pregnancy test after pregnancy test to compare the colour of the lines to check that they were getting darker. I monitored my pregnancy symptoms with the obsession of a lunatic. And much to my absolute distress, this pregnancy developed very differently from my first. There were days where I couldn’t do a thing but lie on the sofa, battling fatigue and nausea, but just as often there were days where I wouldn’t have known that I was pregnant. I was absolutely plagued with fear and doubt.

Each stage came as a relief. At fourteen weeks I developed a slight bump and we heard the heartbeat. At 17 weeks I felt the first flick of a tiny limb inside me. At twenty one weeks I had my anomaly scan which was clear and revealed that we were indeed expecting a little girl; to my great delight. This time round I’d had simply no idea.

By twenty-eight weeks my bump was the size of most full term expectant mothers. “It’s all fluid though,” the midwife informed me, prodding my stomach carefully. “Baby seems a normal size.” That was just about the only thing that I could take reassurance from. Plenty of fluid meant a healthy pregnancy, right? At around thirty weeks I began to relax a little, but not so much that I didn’t cry on Christmas Day through sheer fear and misery. However, the wriggling movements of my unborn child were a constant reassurance. As was the fact that the day of the birth was drawing nearer. It was set for 1st March 2007. An elective c-section.

A week before my set date I went for lunch with my mother. And as I hauled my hugely pregnant self out of the car, I was yet again beset by misgivings. Somewhere deep within, a treacherous little voice spoke and whispered “Don’t be too confident yet. Things might not be as you expect.” I literally couldn’t wait to have my baby born – the relief of being able to look at her and know she was alive was a privilege I craved.

The birth was, as birth often is, scary, intrusive and painful. The spinal block made my blood pressure drop through the floor; my hearing went and I thought I was dying. It took eight minutes to deliver my little girl, from knife to skin. When they switched on the machine that drains the amniotic fluid, I saw the surgeon jump back. She looked very young, so young that before they operated I enquired suspiciously whether she had ever done this before – and was roundly laughed at. A tiny, red-faced, wrinkled baby was plucked from somewhere near my bikini line by an arm and a leg and swiftly transferred to a table. An enormous relief swept over me. She was here. She was alive. It took forever to stitch me up and rather appallingly the spinal block began to wear off and it was painful. Towards the end the surgeon came up to my head, pulled aside her mask and said, “You had a lot of fluid. Over 3 litres. Your baby is fine, luckily, they aren’t always when there’s that much fluid.” Such was my exhaustion and relief I didn’t really understand what she was saying other than that my baby was fine. The tiny bundle was placed in my arms and we were trundled off to the recovery room.

It was about an hour later when I first registered that she looked odd. She looked odd and I didn’t feel, well, as I should. There was no europhia, as there had been after Molly’s birth, I felt flat. And sad. We were deluged by visitors and my baby just looked around. Quietly. I tried to breastfeed her but she was having none of it. Eventually we were taken upstairs to the antenatal ward. The next thing I remember was my baby being taken off to have her nasal tubes suctioned out. I was shocked; my elder daughter had never had such physical interference in five years of life. My new daughter was less than five hours old!

We slept that night, but she didn’t feed. When the nursing staff and I tried to insist on a feed she vomited moments later.

The following day, it was the same. I was sad and flat. I remember cuddling her and her sleeping on her father. Around twenty-four hours after she was born the doctors arrived to give her the newborn medical. It was then that things started to change, to skew, out of all recognisable, post-baby format. Feeling around in her tiny mouth, the doctor found a cleft palate. There was no fuss, no panic, just a calm explanation of what would happen now and who would come to see us. To my utter shame, I discovered that I had no clear idea of exactly what a cleft palate was. For safety’s sake, I was told she would be taken down to the neonatal unit to be properly assessed by neonatologist Dr Brennan. They were very sorry, but Dr Brennan was far too busy to come up to the ward to see our baby there. They wheeled her away in her tiny cot.

Half an hour passed. Then another half an hour. I wasn’t overly concerned, I was just post-section and could barely move. I remember reading a magazine and drinking tea. The sun shone and it was very peaceful. Then suddenly, the ward door opened and a tall man came striding in. Instantly, I knew. I knew who he was and I knew why he was there. I stared in horror as he approached us and thrust out his hand – “Hi, I’m Dr Brennan.” The man who was too busy to come upstairs to our ward to see our baby, had arrived. Upstairs. On our ward. To see us. That was the moment where I learned the meaning of the phrase “to vomit in shock”. I literally felt like I was going to throw up through shock and my whole body went weak and my head dizzy. This man sat beside us and said that our baby did not have just one problem, she had three, and he felt that these were due to some overarching condition, rather than occurring in isolation. If I’m honest, it was no surprise. I had ‘known’ from the very moment that I was pregnant, that there was something wrong with my baby. How could I have known? I couldn’t. But I did. All tests and scans were normal. But that mysterious instinct that links mind and child had told me that something wasn’t right. And it wasn’t. But it took a while for anyone to believe me. Shortly after we saw Dr Brennan, we were told by multiple medical staff that they were sure that these abnormalities (cleft palate, receded chin, hoarse cry) had simply occurred in isolation. But I knew. Eventually a consultant geneticist arrived on the neonatal ward to assess my daughter. He examined her and said that he didn’t think there was anything genetically wrong with her, but there was one condition that he was going to test to exclude. It was called 22q11 deletion, or DiGeorge Syndrome as it is usually better known. He told us not to worry, or Google, as he would give her a less than 5% chance of having it.

A week later we learned that she does have it. Our daughter does have the deletion. She is missing a tiny bit of her DNA sequence and it can never be put right. This was why I had worried, this was why I had cried, this was why I felt strange after the birth, this was why I had an abnormal amount of amniotic fluid; it often happens with genetically abnormal babies. It hadn’t been a positive sign in my pregnancy as I had assumed. It was a warning. Instantly, I envied the mothers of tiny, premature babies that had been on the ward – they were normal, just small. My daughter could never be made ‘normal’. She could never be whole. I spent days imagining her little face morphing into ther correct version if the missing DNA was inserted. I felt angry, indignant and very hard done by. A friend of mine had six healthy children. Six! Why was it my child that had to be affected? It was a chance deletion, an error in the replication of cells at conception. Why had it happened to MY child??

I feared for her future, I feared for my love for her, I feared that she would never know who I was, that she would never call me Mummy. I looked back and realised exactly how much I had taken for granted with my elder daughter; things that the younger one would just never have. Even now, I carry a very deep grief buried inside me that there is something wrong with my child. It doesn’t affect me every day, nor can I access it easily. But it is there, a well of grief that is revealed by the most innocuous things and always without warning. But the mind is an amazing thing. Very, very quickly I stopped wishing that the missing DNA would simply turn up. Very quickly I learned that actually, I would not change her for the world. And very quickly I learned that there are a huge number of syndromes where the problems are enormous and life limiting. In our case, 22q is neither of those. We were lucky. We are lucky. We truly are one of the lucky ones. And just like that I went from being bewildered and angry to feeling extremely grateful, and actually marveling at the fact that any child is born completely healthy. Looking around me now, I literally cannot believe that there are so many genetically normal children born. Knowing what I know, it seems nothing less than a miracle to me. And I had no idea until Alice was born.

Today, she is a happy, healthy, bright, beautiful, talkative seven and a half year old and you wouldn’t know anything was wrong with her. Unless you know the things to look for. She has a slightly receded chin, she has a very small mouth, she has the classic 22q nose, she has long, tapered fingers and almost prehensile toes. But you wouldn’t see any of that unless you knew. I wouldn’t change her for the world. I adore her from the bottom of my heart. If someone happened along now and offered me the missing DNA, I would refuse in a heartbeat. Alice is perfect; unique and quirky and very, very strong-willed! I didn’t know if I would ever be able to love her because she was ‘wrong’. But it wasn’t her that turned out to be wrong. It was me.

PS. Only one thing made me cry when we brought her home. It was a Babygro that her father and I had selected many months before that had a circle on the front, one half green and the other blue. The slogan read “50% Mummy/50% Daddy”. But of course, Alice wasn’t. Still isn’t. However – I like to think that I know which one of us donated the majority share of DNA in my precious girl.

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