It was my first pregnancy and it was all rather exciting, choosing names, all the tiny little clothes, and we’d been so looking forward to having the 20-week scan, desperate to get a glimpse of our growing baby.
Ok, so it didn’t quite live up to my expectations on the day, the grumpy doctor made me cry (it didn’t take much), telling me off for having an empty bladder, even though I’d drunk loads of water as advised. Of course, none of that mattered when we saw the tiny heartbeat on the screen and those lovely little fingers and toes. Thankfully, we were told that everything looked good and our baby was developing normally. However, the doctor was unable to get a clear view of the spine and asked us to come back in 2 wks so she could get a better look. We were assured that this was just a formality and all seemed well. It hadn’t occurred to me that my pregnancy would be anything other than straightforward, I’d always been blessed with pretty good health and I rarely got ill.
So off we went again at 22 weeks, feeling very pleased that we were having another scan, blissfully unaware that anything could be wrong. This time, however, the nurse was concerned about what appeared to be excess fluid on the brain, she couldn’t be sure so she referred us to a consultant for further investigation. I immediately panicked and started thinking the worst. What was the consultant going to tell us? After what seemed like an eternity (but was actually 3 hours), it was time to see the consultant. He wasn’t overly concerned but asked us to come back in a week for another scan to see if there had been any changes. I was starting to get really worried now. When we returned he advised us that everything seemed ok, not much had changed but the fluid levels were still borderline. I was still worried, and we were referred to a larger hospital for a second opinion.
So at just under 24 weeks, we had yet another scan, the doctor was quiet throughout. Afterwards, he took us into a little office and hit us with the bombshell. The brain was severely underdeveloped and had widespread calcifications, and if our baby survived until the end of pregnancy it would most likely have severe mental and physical disabilities and very poor health. The word ‘termination’ was mentioned a couple of times. I couldn’t believe what I was hearing. How had this happened? Why had this happened? My head was spinning; it was hot in that little room, I cried, we were given some time alone to process this information. I was told I would have to have more tests, including an amniocentesis; an MRI scan and a TORCH screen, to try and determine the cause of the problem.
At 26 weeks pregnant, the doctor told us our baby had been infected by Cytomegalovirus, or CMV. The TORCH screen showed that CMV was present in my bloodstream, however, a blood test taken early in my pregnancy showed no CMV, which meant I had caught it sometime in between. As they told me this I felt numb, it didn’t change anything, my baby was still in terrible danger but at least we now knew the cause of it. What was CMV anyway? I’d never heard of it. Once again, the word ‘termination’ was bandied about, and once again I said no. I didn’t want one, I just wanted my baby. We’d found out we were having a boy and knowing that made it seem more real somehow. I’d had to come to terms with the fact that my baby may not survive, but I wasn’t going to be the one to end his life, I’d never forgive myself.
We were referred to a senior neonatal consultant, he was a horrible little man who implied that I was being selfish for not considering a termination. Needless to say we didn’t see him again.
The last 3 months of pregnancy was undoubtedly the worst time of my life, I felt so helpless. When I thought about this precious, tiny little boy growing inside me all I could do was cry. I hated not knowing if he was going to be ok. I got through it somehow, with the help of my amazing partner, who somehow always knew how to say the right thing, or when to say nothing at all and just leave me to my tears. We went to the hospital for more scans every week, it wasn’t looking good, a nurse suggested we contact a priest to ‘make the necessary arrangements’. I felt sick to my stomach. I put on my brave face when approached by well-meaning old ladies in the supermarket, I hurried past all the baby shops I’d once spent hours looking at, and I dreaded the day I went into labour.
I spent hours on the internet, researching CMV, it just made me feel worse. I learned that it was a virus commonly passed from person to person. I learned that it generally wasn’t harmful unless passed on to a pregnant woman who had never had it before. I learned that it could be prevented, by taking a few basic precautions, like not sharing food or drinks with small children, or kissing them on the mouth, as they are the main carriers of the virus. I learned that CMV affects as many as 1 in 150 babies. So why hadn’t I heard of it before? Why had nobody warned me I was at risk of harming my baby? There wasn’t anything in the pregnancy books, no leaflets in the doctor’s surgery and no mention of it from the midwife, in fact, she’d never even heard of it. I got in touch with other families affected by CMV and I read lots of stories about desperately ill children, some of whom had tragically passed away. Many others who were severely disabled, blind, deaf, epileptic, tube fed…. How would I cope if my baby never walked, talked, crawled or did anything ‘normal’? Or worse, what if he was in constant pain? What kind of a life would he have? We really didn’t know what was going to happen, but I promised myself I’d do everything I could to give my baby the best chance in life, whatever that meant.
Our baby was born, a week overdue, on 8th July 2009. He weighed a healthy 7 pounds and all his vital statistics looked good, he was breathing well, feeding well and doing everything a newborn baby should. A team of consultants were present for his birth, waiting to whisk him away to the intensive care unit, but he didn’t need to go as he was doing fine. We didn’t know what the future had in store for us but for now, our beautiful little boy was here and he was perfect. 3 months of fear and anxiety just melted away when I looked at his sleepy little face and he wrapped his tiny little fingers around mine. We named him Theodore, which means ‘Gift from God’ in Greek, and after 4 days in hospital, we were allowed to bring him home.
2 years on and Theo is making progress, albeit very slow. He is completely dependent on us for everything in his life. He doesn’t walk, crawl, or sit up on his own yet, but he’s recently started holding his head up, and we’re starting to hear a few little words, like ‘more!’ when he’s hungry, or ‘gee!’ when he wants a drink. He’s unable to use his hands effectively, so he can’t feed himself or just pick up a toy when he wants to play, this makes it very difficult for him to learn and explore by himself, so he needs constant help. From the age of one, he’s had seizures every single day, and he’s spent a lot of time in hospital because he has respiratory problems too. He’s registered blind (although he can see a tiny bit), and he only hears in his left ear (it’s very good though, he can hear a pin drop!). He rarely sleeps more than four hours at a time, so he wakes us up constantly throughout the night. He’s just about managing to eat solid food if it’s cut up really small and he eats incredibly slowly. He’s very floppy and his muscles are weak, but we keep persevering with his physio and he tries so hard, he’s getting stronger every day.
It would be easy to feel sorry for him because of all that he has to endure, yet in spite of everything, he is a happy, sociable little boy who loves his cuddles. He babbles away to anyone who will listen and his warm, rumbling belly laugh is so infectious that you can’t help but join in. Everyone who meets him comments on his beautiful soft, thick black curls, and those eyelashes – the kind of eyelashes that most girls would kill for.
It would be easy to feel sorry for us too, god knows I’ve felt sorry for myself at times. Yes, there’s been a lot to come to terms with over the last couple of years, and yes, we’re exhausted and our backs hurt from carrying him around all the time. Yes, we’re full of anxiety about the future and we wonder if he’ll ever be able to do any of ‘normal’ childhood things like riding a bike, kicking up the leaves in autumn or chasing his friends around the park. Or any of the more mundane things like feeding himself, drawing a picture, or sitting on a ‘normal’ chair. Things I had previously taken for granted.
Yes, life is hard sometimes. But as I sit here and write this, Theo is practising his standing, with a bit of help from daddy and I realise how lucky we are to have him in our lives. Our little Gift from God. He’s filled our home with so much laughter and sunshine, and opened our hearts and minds up to new possibilities. He has taught me so much, and I truly believe that because of him I am a wiser, more patient person. He’s helped me find strength that I never knew I had. I’ve met some amazing people along the way who’ve offered me support, kind words and inspiration, and people who work tirelessly to raise awareness of CMV. I’ve been overwhelmed by the kindness and generosity of family, friends and complete strangers. I’ve been amazed at the lengths that people will go to, to help a disabled child. And I continue to be amazed every day by the boy and his tiny little milestones. My little Theo. My heart swells with pride as I watch him, grinning away, despite the Herculean effort it’s taking for him to maintain a standing position. He never complains, so neither should I.