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Sophie's Story
"My second child who is 13 months was born by caesarean section on the 28th of June, 2010..."
She weighed 3kg. She was a Caesar baby due to complications I had with my first child. My pregnancy was normal with no complications.
At three weeks, the paediatrician picked up that her head was small in circumference but would keep an eye on it. I went at 3 months for a check up, he was still concerned but said there was no need to panic, he then only asked to see her again at 6 months. At 6 months I noticed that she was not holding her head up as well as my first born at that age and she was a lot more behind in her development skills compared to my first. We went to our check up and the doctor advised that her head was not growing as it should and scheduled a CT Scan and blood tests. This is when my whole world fell apart. He advised me that she had Congenital CMV and as a result she has brain damage which caused the microcephaly.
Most of the damage is to the right hand side of her brain that affects her left side. On her left she is a lot slower and does not use the arm very much, she is profoundly deaf in that ear and the right ear she can only hear from 120 decibels. Her eyesight has not been affected and has been given the all clear. We have been told that she will be a lot slower than other kids to what extent they cannot advise me, we just have to take it on a day to day basis. I think this is one of the most frustrating things and hope that through Stop CMV we can hear and learn about other parents experiences.
We currently have her enrolled at baby gym where we are building connections between the brain cells so that she can reach her milestone which is every two weeks, it is an intense home exercise programme of 10 different exercises a day, it aims for you to do 50 000 repetitions in two weeks and we also do phsyio once a week. We have also seen a speech therapist who has given us a programme to work with and waiting to see an OT this week. It is extremely hard work on all of us but we are seeing a huge improvement, to the fact that her head grew .5cm last month and we are getting closer to our milestones. She is now sitting unaided for short period of times.
She is currently wearing hearing aids, which has made a huge difference to her life, and she has just been approved to get cochlear implants, one this year and one in 2012, which is another journey all on its own. As in Botswana we do not have these facilities and have to frequently visit South Africa for treatment and rehabilitation.
I have since joined your network and the stories received give me so much inspiration, it is also quite frightening to hear how many people are affected and did not know about it. They don’t test here, but with enough awareness I would like to see that they start testing every person thinking of conceiving or already pregnant.
Thanks so much for a great and informative website.
- Shared by her mother, Sara