Tom and Natalie: congenital CMV doesn’t define our children
Tom was born in August 2009 as the youngest of our 4 children. Although a couple of weeks early and born via C-section, Tom appeared well at birth and soon settled into our busy family life as the much-loved baby brother of Harry, Emily and Alfie.
A shock diagnosis at 9 months old
As the months passed, we began to notice Tom, although a very smiley and happy baby, seemed to be progressing a little more slowly than we expected and wasn’t meeting all of the usual developmental milestones. For example, Tom wasn’t babbling or sitting up independently at 8/9 months old. We put this down to him being the youngest and having everything done for him by either us as parents or his siblings. At the age of 1, Tom had a follow up hearing test appointment after suffering a serious ear infection for which he was hospitalised when he was 9 months old (right ear). At that appointment, the consultant became concerned that Tom was not responding to sounds on either side and asked us to return for Tom to undergo an ABR test under sedation. That was 11th September 2010, a day I will never forget, when we were told Tom was profoundly deaf in his left ear and severely deaf in his right. My first words were ‘Will he ever talk? Will he ever hear our voices?’. We were in complete shock. Although we suspected he would have some level of hearing loss, as since the previous audiology appointment we had begun to notice he wasn’t turning to various sounds, we were not prepared for such a significant loss.
Congenital CMV – an unknown virus to us.
Further tests, including an MRI scan, urine and his Guthrie card revealed that Tom was born with cCMV. We were devastated that a virus we had never even heard of had left our son with a permanent sensory disability and other potential consequences. In particular, as his Mum, I spent many months feeling heartbroken that I had passed on a virus that had caused his hearing loss and possibly more difficulties to come. Even as the years have passed,
I still carry that guilt and don’t think it will ever leave me.
After trialing hearing aids, Tom was referred to the local implant centre, where after months of long motorway journeys and tests, we were told that as Tom’s right ear was 5dB out of criteria, he would have to wait another 6 months to be reviewed again before a decision to implant could be made. This came as a crushing blow as we knew Tom was not receiving any benefit from his hearing aids and we had never been given any indication that they may say no to implants. However, once Tom’s Guthrie card was tested and found to be cCMV positive, we were able to apply for special funding on the grounds that CMV hearing loss is likely to be progressive. Tom was implanted at the age of 2 years old.
Although Tom’s hearing and listening developed well with his implants, his speech and language took longer to develop and in addition to the local NHS speech and language therapy Tom received, we decided to invest in private therapy and often travelled miles with Tom for his sessions. Tom had particular difficulties with his speech production which we believe was as a result of CMV.
School
Tom began mainstream school at the age of 4 with significant speech and language delay and was supported by a specialist teaching assistant. Tom was unable to read using phonics and required intensive support to help him learn to read using the whole word approach. Whilst he became a good reader, he then had difficulties spelling which then impacted his writing – an issue that he still struggles with at secondary school. Over the years, whilst Tom’s speech and language progressed and he began to make good progress in many areas of the curriculum, we realised he had significant learning needs in the area of numeracy. At the age of 12 Tom was diagnosed with Dyscalculia and assessments revealed he had a maths age of 6 years old, with particularly poor short term memory recall. Again we feel there is a probable link with CMV.
Another diagnosis at aged 8
In 2017, aged 8, our amazing young man was diagnosed with Type One Diabetes – a relentless life-long condition requiring insulin to stay alive and for which there is no cure. Although there is no link between Type One and CMV, because of Tom’s hearing loss the impact of CMV is felt, yet again, every day. Tom has a continuous glucose monitor and insulin pump, both which have alarms to alert Tom when his blood glucose levels are too low, too high, or there are issues with the pump and insulin delivery. Tom is not always able to hear these alarms, particularly overnight when he does not have his processors on. This means Tom, even now at the age of 14, is completely reliant on us as parents to hear the alarms via our phones to keep him safe. The future for Tom is unknown as we navigate the possibility of him living independently with Type One Diabetes and the profound hearing loss that CMV has caused.
CMV has impacted our entire family
The diagnosis of CMV had a huge impact on our whole family life as we adjusted to Tom’s hearing loss – learning about communication methods, speech and language, hearing aids and cochlear implants. The endless medical appointments and travelling to the hospital, not just our local hospital but the implant centre over 70 miles away, took up so much of our family time and meant that Tom’s 3 siblings often had to stay late at school or nursery or be looked after by family members. In particular, we have always felt that our third child, Alfie, did not always receive the attention he should have from us as parents when we had to focus so much on Tom.
We spent time worrying about the potential of other difficulties or medical problems especially having been told his MRI had showed ‘white matter’ and ‘changes’ on his brain. We didn’t know what to expect and there seemed so little knowledge or understanding about CMV within the medical profession. Initially, it felt like we had a lifetime of unknowns ahead and little support from anyone to reassure us otherwise. It took time to realise and learn that rather than constantly worry, it was far better to focus on enjoying all the positive moments with Tom.
Off to School
For me as Tom’s Mum, I felt so guilty that I had carried a virus and then passed this onto Tom causing a permanent disability. I have never truly got over this and still feel moments of guilt, particularly when Tom faces something challenging in his life because of his hearing loss.
We had never heard of CMV until Tom was diagnosed and neither had our Health Visitor.
On the whole, the healthcare Tom has received has been exemplary. The audiology team around him when he was diagnosed with his hearing loss were excellent in their approach and support to both Tom and us as a family. Apart from the initial issue, discussed above, regarding Tom’s implants, the implant centre team have also provided excellent professional support over the years.
However, there was little support specifically regarding CMV. The consultant pediatrician delivered the diagnosis in a sensitive and professional manner, but had little information or advice to give us. Apart from a follow up appointment one year later with the pediatrician (Tom aged 3), there has been no further support or appointments regarding the CMV.
Tom’s strength
Stand out moments have to be Tom’s own determination and resilience. He has a passion for sport and never lets his hearing loss (or his Type One Diabetes) stop him. Over the last 2 years Tom has been part of the FA Para Regional Talent Programme (Football) following selection at a regional event. Tom attends 4 regional training days with FA coaches and trains alongside young people with either hearing loss, vision impairment or cerebral palsy, with the long-term goal to play for the England Men’s Deaf Football Team! Tom also plays football for his local mainstream team, having been a valued member of the team for over 6 years and this season was made Vice Captain. Over the years he has won the Most Improved Player and Players’ Player trophies – both twice. Tom is currently working towards his Silver Duke of Edinburgh Award and last year was awarded a Certificate of Recognition in the National Duke of Edinburgh Boundary Breaker of the Year category after his teacher nominated him following his Bronze expeditions. After spending two weekends away with Tom, his teacher remarked on just how many challenges Tom faces in his everyday life and how resilient he is.
A message for other parents and families of children living with cCMV
You are not alone
Although it may feel like that in the early days when you feel overwhelmed and bewildered by the world of CMV- there truly are other parents and families who understand. It is ok to feel upset or frustrated. Enjoy your child. Try not to get too focused on the unknowns of CMV. Look for and celebrate the many moments of joy, the successes and achievements and, although CMV doesn’t define our children and young people, know that these moments are always that extra bit special because of the challenges our children have overcome.