Mike’s birth was nothing but dramatic, the moment my waters broke they were thick with meconium. I was allowed to labour but the doctors struggled to keep a good trace on Mike’s heart and so he was born by emergency caesarean section. In the seconds he arrived into the world, the delivery room was filled with firm shouts of “he’s covered in a rash!” and I have a clear memory of the paediatrician running and looking into my face saying, “have you any blood clotting or platelet disorders in the family?”
I remember thinking to myself, calm down everybody, these things don’t happen to people like me, he’s fine: but these things clearly do. He wasn’t fine.
Our time on the postnatal ward was the most difficult time in my life. Mike had to be taken to the Neo Natal Unit as he was really sick. He needed blood tests and transfusions, lumbar puncture, antibiotics and tube feeds. The separation caused me to become poorly and through fear I had an active “virus” or infection, I was barrier nursed to my room, meaning that I couldn’t even see my new, poorly baby.
At three days old our Neonatologist, Dr Bowden told us, “Michael has Congenital, which means born with; Cytomegalovirus and he is very likely to go on to have some problems.” In that moment my life changed forever. Thoughts of life with a disabled child and the worries that would bring immediately sprang to my mind, but also in that instant I knew that I was always going to do whatever it took.
I vividly remember covering my eyes for a moment and everything flashing by, before opening my eyes and saying to the consultant, “right, what can we do?” I’ll never forget in the moment of diagnosis, that our consultant never took her gaze away from me. Nearly five years on, I carry that as a reminder that she had every faith I could handle this, and I have.
Our first obstacle was getting out of hospital. Mike had a dropping platelet count and nobody really knew how to deal with it. We were discharged in the end on the basis that we rang an ambulance if we noticed any change in him (and that we didn’t drop him!) When I look back on this, it makes me smile. I’ve always been a real worrier and I remember at the time being terrified to take him home, but that urge to get the four of us under one roof alone, even just for a short time was so compelling. I guess looking back, it was the start of making every moment things were ok: count.
We got home and stayed home (for some of the time!) At two weeks old, Mike began a six week course of Valganciclovir. His platelets shot up to a healthy level upon starting the drug. The Valganciclovir did make his blood even more poorly but we were fortunate that we didn’t have to take a break in treatment and treatment went without a hitch. He recovered and we were able to take a sigh of relief for a couple of months.
It wasn’t really until I tried to wean Mike at six months old that it became apparent that CMV hadn’t left his development unharmed, as we had hoped. Mike had been such an easy newborn, he barely cried, in fact, he made no sound really; he followed my sleeping pattern and fed and grew, albeit slowly. Irrespective of all our challenges, I’d been able to exclusively breastfeed Mike for the first six months. He simply couldn’t wean though, and we didn’t know why, as physically he could eat; he’d breastfed well after a tongue-tie had been cut.
Feeding became a massive issue, eventually resulting in a period of NG tube feeds just before he turned two. At twenty three months Mike was the size of a small six month old, with a dangerously low BMI.
In May 2014, just after Mike turned two, our local Clinical Commissioning Group paid for Mike to see behavioural psychologist, Clarissa Martin from Midlands Psychology, to teach him how to eat. His problems relate to a combination of factors but the greatest challenges to him eating are sensory and behavioural in nature. Through the use of behavioural techniques, Mike now eats a limited but safe diet and within a year of working with Clarissa, he began to walk (at just over two and a half) and he started to speak at three. His development came on in leaps and bounds and learning about his behaviour makes us understand him so much better.
Clarissa, Mike’s psychologist has explained to us, that the Congenital CMV has altered his neurological development. Using her techniques, we are helping Mike make new connections and challenge what would have been his natural course of neuro-development, caused by his Congenital CMV infection. As a family we have committed to using these techniques without fail, it is a new way of life, but the results outweigh anything I have ever achieved and the joy that getting to enjoy his life brings to Mike, is the best thing ever.
As a result of the work we have done with our psychologist and as a family, Mike is thriving in a mainstream school, now in reception with full time support. I worried so much about how he would manage but he takes everything in his stride and is so eager to learn. His classmates are so understanding of his difficulties and he strives with all he has, to keep up with them. His teacher is thrilled by his confident nature.
Within the last year, we’ve transferred the behavioural training skills we’ve learned and managed to potty train Mike. I’m amazed he’s mastered this as he has, but then that’s his thing, he never stops amazing us!
We’ve recently set about working with our local CAMHS as some of Mike’s behaviour isn’t able to be managed with the behavioural techniques we are already using. I really want to be equipped to meet the new challenges we will face as Mike gets bigger and we can’t carry him anymore, in particular. There are plans to send us on some parent training, to enable us to act as detective and maybe figure out what triggers some of the behaviours we see. Ultimately, however, there may be no solutions for us, but if we increase our understanding it does make life easier: we have learned that lesson from our feeding journey with Mike.
He has lots going on that we have no answers for and as time goes on, I don’t think we ever will. He has really poor balance and coordination (but that is improving with the help of rebound therapy), he has boundless energy and functions fine on limited sleep. We spent a long time being told let’s wait and see, but the answer we get as he gets older, is that this is Congenital CMV.
Mike is the most wonderful little boy. He has the biggest heart and loves nothing more than a great big hug. He makes new friends everywhere we go and brings the best out in everybody. He has strength and determination like I’ve never seen before, which is funny given he’s such a tiny boy. His development constantly challenges us as his parents, but we have become so patient and resourceful, it’s pretty beautiful. I love him so much.
(Written by Mike’s Mum, Rebecca. Mike has a blog, www.tubetochicken.org.uk following his feeding journey and growing up with Congenital CMV)