We need to #TalkAboutCMV

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 in to 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 in to 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. Three 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 Valgancilovir 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 that it became apparent that CMV hadn’t left his development unharmed, as we had hoped. Mike had been such an easy new-born, 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 breast feed 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 breast fed 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, to teach him how to eat. His problems relate to a combination of factors but the greatest challenges to him eating, are sensory processing disorder traits and autistic traits. Through the use of behavioural psychology, Mike now eats and since we started with Clarissa, he has started to walk (at just over two and a half) and he has started to make words. His development has come on in leaps and bounds and we 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 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 now set to start mainstream nursery this September. I worry so much about how he will manage but I am so excited at the prospect he will get to be like everyone else and achieve things I’d never even thought possible. It’s going to be challenging but it’s worth it, and can’t be any more of a challenge than those we’ve lived through before with him.

At a recent meeting with his paediatrician, Mike was described as “a very unique little boy” with a “spikey profile”. We have talked at length with regards to a diagnosis of Autism (and a Sensory Processing Disorder) and although an assessment will happen at some stage, for now we are waiting until Mike turns six or seven, so we can distinguish what may be Autism and what may simply be attributable to his Congenital CMV.

Mike has lots going on that we have no answers for yet, like why his balance isn’t too good and why he never stops, but now he’s three, we seem to be accessing the right help and are in the right direction. We spent so long being told let’s wait and see, we are still waiting and seeing but feel like we have the right help and support now he’s a little bit older and we are finally being listened to.

Mike is the most wonderful little boy. He has the biggest heart and loves nothing more in the world 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. I love him so much and I feel very lucky (and tired, haha!) to have been entrusted with such a special little guy.

To learn more about CMV, please go to www.cmvaction.org.uk we need to #TalkAboutCMV