Wednesday, 18th November 2015, CMV Action was invited along to The Listening for Life Centre at Bradford Royal Infirmary. It was a day for professionals, focusing on CMV & Sensory Integration. With a boy as sensitive as my Mike, this was just up my street and I jumped at the chance to speak on behalf of CMV Action.
First up was Dr Stephen Hughes, from the Royal Manchester Children’s Hospital. He gave a clinical perspective about the virus. I’ve heard lots of doctors talk about CMV, but never heard the perspective of an Infectious Disease Specialist, with a keen interest in this particular virus.
I learned a few new things about Congenital CMV
1. The ‘blueberry rash’ babies, like my Mike are born with, is the body trying to make new blood in the skin, so in effect it’s bone marrow.
2. Children born with Congenital Rubella, have the same rash.
3. The Guthrie card can be a great way to get a diagnosis of CMV, but it can produce a false negative too, for lots of reasons. Therefore if Congenital CMV is suspected and the Guthrie card gives a negative result, it might not be accurate and CMV should not simply be discredited, if there is a negative result.
4. Urine samples, when CMV is suspected, are a great way of getting a diagnosis. Samples can be collected by putting a cotton bud in the nappy, there is no need for the sample to be sterile (I’ve spent many an hour waiting to catch urine in hospital!) as they aren’t looking to ‘grow’ the virus. Mouth swabs are just as effective.
5. There are so many studies that need to be carried out properly and effectively.
6. CMV Action and their supporters are critical to there being any notice taken, in relation to finding an end to Congenital CMV and the harm it causes.
It is strange to hear how this virus, that changed every part of my life, has a place in a laboratory too. To me, it tipped my world upside down. To the laboratory, it’s a urine sample or a mouth swab, some cells that they are desperate to understand and work towards putting a stop to.
I was humbled listening to Stephen he knew the harm this could cause Mike well before I had even heard of CMV. It didn’t harm his life, but he gets the harm it causes in the lives of others. I for one am really grateful he has this passion. Equally I’m inspired by the power he sees CMV Action having, in terms of moving forwards.
My favourite question put to Stephen, is why on earth does nobody know about this virus. He wondered if it was to do with a stigma attached to an ‘infection’ in pregnancy. Maybe that has a small part to do with it. Stephen put the question to me, and in my opinion it’s because people are scared.
Midwives and Doctors scared, that in effect there is no way to completely protect yourself against the virus. You can exercise hand hygiene and not sharing food as a precaution, but as a young mum of a toddler for example, you are at risk and it is in reality, really, really harmful. It not only is the leading cause of childhood disability, but causes miscarriage and still birth too.
The only way to prevent this virus from continuing to cause harm to our babies, is a vaccine but we will only get there if people start to #TalkAboutCMV and the profile of this little known but super common virus is raised. This attitude of fear and suggestions of ‘scaremongering’ (as I’ve seen often online) are unhelpful. Week on week, my list of CMV Mummy friends grows, as they give birth or lose a child, to find their little one has been harmed by something they knew nothing about. It’s not fair to be afraid. Our voices need to be heard.
I was next up and I’d been asked to talk about CMV Action and my son, Mike.
In particular the hurdles we’ve faced raising a child with CMV. There are plenty of hurdles and I’d chatted to some other families ahead of the day, there were common threads:
1. Professionals in so many places! So very difficult to get the different professionals working together.
2. Parents not being listened to!
3. Failing to understand that Mum and Dad are Parent Experts, in their child.
4. Our CMV children being misunderstood. Their sensory needs are particularly unique and more needs to be done by professionals, to understand these needs.
I loved retelling Mike’s tale and it’s hard at points to not be captured by the harsh emotions that go along with his story. The saddest part of Mike’s life for me, was the early days. Being barrier nursed in one room and my new, very poorly baby, barrier nursed in the Neo Natal Unit; was the toughest time in my life. Nobody understood the virus and it made me feel so frightened. These professionals should have known about it. Maybe then, these days wouldn’t have been so scary for me.
The best part to Mike’s life is the abundance of amazing people, who have touched us. The two experienced midwives on the post-natal ward that respected and cared for me. The student midwife, who provided friendship and warmth, at a time I felt desperately lonely. Our Neonatologist, who advised about, and cared for my precious little bundle. The nurses that understood just how sensitive Mike was. The Speech and Language Therapist who supported me to get the right treatment for Mike and the psychologist who treated my boy and helped us rebuild our lives.
CMV Action, who gave me support from day one and the families that give me support, inspiration and encouragement, to keep going on this really tough journey.
I loved talking to the professionals. I guess they see loads of mums like me every day with their little ones and are generally unaware of the heart hearts that preceded that appointment or referral. I’d love to do more of these talks going forwards.
The most exciting part of the day for me was listening to Amy Stephens, Sensory Integration Specialist.
I was very lucky, as after hearing about Mike, she altered her talk to use him as her example.
It was so interesting to learn more about his complications and why his brain, makes him react and behave like he does. In addition to this, she was able to explain from a sensory perspective, how the behavioural therapy we use with Mike has its place.
The more I learn about sensory integration, the more my little boy amazes me. The more I know, the more I am reminded how vital my family and I are, in helping Mike navigate our sensory world.
I came away from the day feeling so proud to be part of the work CMV Action is doing. Days like Wednesday should be happening more. We really need to raise the profile of this little known virus, so we limit, and eventually eradicate its presence. Our babies deserve this.
As I drove along to the M62 to Bradford, from Manchester. There was a huge rainbow, that went from one side of the motorway to the other. I couldn’t help but think of our CMV children and those little ones we have lost: my inspiration.
It doesn’t have to be this way.
(Thank you so much to Helen Peebles and her team, at The Listening for Life Centre BRI, for arranging this information day)