Helen & Alfie – CMV makes you look at the world differently
Alfie was born in December 2018 and is the youngest of four children. He has three older sisters, Evie, Millie and Chloe. Throughout my pregnancy I was told it was ‘text book’ even though I complained to my midwife and GP for many weeks at the beginning of feeling very run down, tired, shivery, especially in the evenings, as if I was fighting an illness. I was just told it was a normal part of being pregnant and having three young children so trusted this advice. It was commented in our 20wk scan that baby had a ‘very neat little head’ which I thought was odd as my girls had all had heads measuring on the larger (but none concerning) scale, however when I questioned this was told not to worry as the measurement was ‘just inside of the safe zone’, left the scan feeling concerned but family reassured me to trust the experts!
Concerns for Alfie
Labour was quite quick. We didn’t quite make it into the hospital and Alfie was born on the doorstep of the maternity building at Watford General at 21:01 on 13th December 2018. Because of this situation he was carefully checked over by the crash team and quite quickly taken to the special care baby unit (SCBU). We were able to visit him soon after and they reassured us that they just wanted him to get warmed up, however he was covered in a pinprick rash so they asked a few questions and were slightly concerned he had sepsis so wanted to start treatment. Alfie stayed in SCBU and I was moved to ward. I was able to feed him at 4am in the morning. The next morning we were called up and had a meeting with all the top staff and nurses in SCBU and were told that they had huge concerns for Alfie as he had a small head, enlarged liver and spleen and was also covered in this red pinprick rash. They questioned my pregnancy but after a chat with St Mary’s hospital London suspected Congenital CMV. He was soon tested and a couple days later it was confirmed and antiviral treatment started.
We were told because of the brain damage CMV had caused it was very unlikely Alfie would ever, stand, walk, talk, see or hear.
Alfie had to stay in hospital for three weeks, which was a very challenging time as I (mum) stayed with him, away from my other three children, over the whole of Christmas and new year. The family did, of course, visit as much as they could.
A happy and cheeky little boy
Before being sent home Alfie had a hearing test which was all good and it was confirmed his hearing was ok – first bit of good news! Alfie’s hearing remains stable and is actually the sense he relies on most of all to work out where is and who he is.
His eyes were checked and at first this was all clear (sigh of relief) but later we were told this wasn’t the case and the virus had caused lesions in both eyes which would most probably affect peripheral vision. Alfie has been diagnosed with cerebral vision impairment and is registered visually impaired.
He started frequent physio at 6 weeks old, Covid got in the way of this and, although he still accesses physio it’s not as frequent. Alfie was officially diagnosed with quadriplegic cerebral palsy at 2 years old. He has very limited movement in his arms and legs and finds head control very challenging. Alfie is unable to stand or sit unaided.
Alfie started to have seizures at 1yrs old and is on medication to help control these. We have been through many challenging and concerning times when Alfie’s seizures are not under control as he can have as many as 10 in one day.
Alfie is unable to talk. However he is a very happy and cheeky little boy and we are currently exploring ways for him to communicate using switches.
An emotional time
We had never heard of CMV before Alfie which is something we can’t quite get over.
The initial diagnosis was a very frightening and emotional time as you can’t help but think about what the future might hold and have a million questions and no understanding of how to get the answers. We were worried how this might impact our daughters’ lives and whether we would be able to provide the care Alfie needs? As time goes on, we have become better at taking it day by day; month by month and have gradually become better at navigating the world with a child with special educational needs.
I think the main hurdle to begin with was the guilt – if I hadn’t caught CMV then Alfie would be ok and this is a thought I often have to stop myself.
A constant battle
Accessing what you need is a battle and continues to be as everything has a waiting list! we were lucky in some sense that Alfie was diagnosed at birth and immediately referred to various community support systems e.g. physio and OT which in turn referred me to a local baby and toddler group for children with SEN. This was hugely valuable in supporting me personally as it gave me the opportunity to talk to other parents in similar situations, share advice and just reassure you that you’re not the only one! The teacher and other members of staff that ran this group were also amazing at sharing advice and providing a driving force in Alfie getting his first EHCP (educational health care plan) set in place, ready for when he started education.
Accessing support in adapting our houses accessibility for Alfie has been a struggle and continues to be. We have been on a waiting list for 2 years.
We even found getting a blue badge for Alfie very difficult and quite judgmental.
When I take Alfie to his numerous hospital appointments, I am shocked by the fact that they don’t have accessible scales and height charts for children that can’t stand or sit unaided.
Parental worry
You are constantly worried you’re not doing enough for your child and when you feel you’re not being heard this feeling becomes quite overwhelming.
We were very worried about schooling for Alfie as I knew places in SEN schools were limited. In September 2023, Alfie started at a school specializing in pupils with physical and neurological impairments and this was a huge relief for us as we knew he would not be able to thrive in mainstream education with his high level of need.
When Alfie was about 6wks old meeting Dr Lyal at St Mary’s hospital in London was a changing moment in our journey as she not only explained CMV to us, but made us realize that although this wasn’t the journey we had in mind for our fourth child, it will be ok and that although there will be hard times there will also be many good – and she’s been right!
Seeing Alfie’s sisters support and help care for Alfie is incredible. It makes you look at the world differently and appreciate what we take for granted – being able to hold a fork in our hand to eat, bring a cup up to our mouth to drink etc.
Alfie has undergone hip reconstruction surgery and seeing him smile his way through the recovery is remarkable. We constantly have people telling us lots about what is wrong with Alfie but then seeing him take part in his first Christmas show at school makes you realise it’s all worth it.
We have recently been supported by the amazing charity Motability in requiring a wheelchair accessible vehicle to make life a little easier for us.
Even though there will be challenging and emotional times, it will be ok, and never give up fighting for what your child needs. Make sure you are heard!
Also, don’t feel bad about asking for help – there are some amazing Charites out there to help you.