February 2010
I fell pregnant with my beautiful daughter Megan in 2009.
There were a few minor complications with my pregnancy as I am rhesus negative so I was getting used to being in and out of hospital. However, on my 20 week scan they told me that a ‘yellow blob’ had shown up on the scan and that I would need a specialist scan with a consultant. They told me it could be cystic fibrosis or Down’s syndrome and offered me the screening to test it, I said no as it wouldn’t have made a difference to how much I had grown to love my unborn baby.
I went on to have another scan within a couple of weeks and was told that the ‘blob’ had disappeared which I was quite relieved to hear. But I went on to have even more scans, in all I had 10 scans throughout my pregnancy, when I asked why? The midwives would say ‘we are just checking on her growth’.
When I was 37 weeks gone I had a scan and a general check with the hospital midwives, they told me they were concerned about Megan’s growth, but that everything was fine. However, they wanted to induce me within the next week. If anything I was excited to meet my baby girl!
I gave birth to Megan Rose Walker at 08:28am on 18th February 2010, a very easy and stress-free labour! But yet we stayed in for 3 days, despite having such a fantastic birth. I was confused, when I asked why; I was told they just needed to check her urine samples. We eventually went home and began our new amazing life with our bundle of joy.
When Megan was 12 weeks old we attended an appointment with a paediatrician, it was then that I was told that Megan was born with CMV, that I had contracted it at some point in my life or pregnancy. They weren’t sure how badly Megan had been affected yet.
We were told Megan would have to see a paediatrician every 3 months to assess her growth and development. Megan was also being referred to Tameside hospital audiology and Manchester eye hospital as she could lose her sight and hearing due to CMV.
I was so confused!!! What was I hearing? I had no idea what the paediatrician was talking about! What is CMV? How did I get it? Why does Megan have it? And how serious was all this? I honestly thought she had got the wrong baby!
We had our regular appointments and at 8 months old Megan still wasn’t sitting up by herself, eventually, she did but then at 14 months she wasn’t crawling. It was becoming clearer to Megan’s health professionals that her physical development was delayed.
At the age of 2, Megan had just started walking, but she was so unstable and off balance. She had bowed legs and her feet turned inwards.
She was referred to the physiotherapy department and had her first assessment. We agreed that the best treatment for Megan at the time was to get her an appointment with the foot specialists, to measure her feet for special made shoes to correct her feet turning inwards. The shoes would also have an instep to create an arch in her foot.
Megan still wasn’t talking either, and she was referred to speech and language.
A year and several special made shoes later and they said there wasn’t really anything else these shoes could do for her, it wasn’t working. She went back to have an assessment with physiotherapy, shortly after her second assessment Megan started block physio sessions, working to gain core strength.
Physiotherapy drained her a lot, she would get so tired and emotional.
Megan also had her head measured for a helmet due to the severity of her falls, as they couldn’t yet correct it, her safety was the first priority.
Several sessions later and the physiotherapists were not sure what else to do. They couldn’t pinpoint the reason for it all, they are still unsure whether it’s her bones or muscles. Megan still falls just as much, countless times. Her pediatrician made the decision to refer her to podiatry in the hope that they can look at the bone structure in her feet and find some relation to her falls to correct it, she now has podiatry insoles in all of her shoes, Megan may need an operation to correct her walking but it is still an ongoing battle.
Eventually, we were referred to occupational therapy and had adaptations put in around the house and gardens.
Megan needs full assistance getting washed and dressed every day, she struggles with fine motor skills such as feeding herself with cutlery and writing.
Megan had a specialist pushchair from the age of 3 and now has a wheelchair.
We have attended countless speech and language appointments and at the age of 5, Megan has made a great improvement. Although she still struggles to express emotion through speech but has a lot of guidance and support. Megan has also learnt some sign language which helps a lot!
Megan was referred to a sleep clinic at the age of 3 as she was thought to have sleep disorders. We attended many sessions and tried lots of strategies and failed. Megan still struggles to ‘switch off’ as her mind is very active, but they now believe it could be related to sensory processing.
Megan is now 5 years old and currently attending a mainstream school.
Since she has started school, some behavioural problems have arisen, we couldn’t figure out why for a while until Megan was diagnosed with hyperacusis; an extreme aversion and hypersensitivity to sounds that are generally not an issue to others.
Since this diagnosis, health professionals have found a link to hypersensitivity in her other senses, such as sight and touch.
Megan struggles in unfamiliar, loud and busy surroundings and situations; she can’t always process what is going on and gets frustrated and upset.
Many of her health professionals have highlighted the possibility of autism or ASD, which I strongly believe. However, it’s very unlikely that Megan will be given a diagnosis until the age of 7 at least.
I cannot put into words how CMV has changed our lives. For a long time, I struggled to accept that it was just a virus that did this to my baby girl, which is why I am so, so passionate about raising awareness of it. If only I had known about CMV, I could have protected myself and my unborn baby from it.
We have had our struggles, but have grown from them. We have had to fight for a lot, it has been a very emotional and sometimes heartbreaking journey, and we still have a long way to go but Megan is an extremely happy, very bright and determined young lady. She is the sweetest, most polite, kind hearted and loving little girl I have ever met.
She is my best friend as well as my daughter, she keeps me going every single day and reminds me how amazing life is with her by my side. She has taught me more about life than any teacher or adult ever could.
CMV Action is an amazing charity, and I am forever grateful that I have found them! They have supported us in many of our obstacles and have treated Megan and I like a part of a big family. I’ve met and spoke with some wonderful families and have truly enjoyed being a part of the CMV Action team, fundraising, raising awareness and helping to plan events.
I will do anything in my power to raise more awareness for CMV and how dangerous it can be to unborn babies. Absolutely everyone needs to know of it!
Written by Megan’s Mum, Colette.
