Queensland, January 2008
When I was pregnant with Kayla I was constantly told that I was very small so I queried my GP about it and he said that everything was fine. When I had my 37 week check-up at the hospital in Brisbane they said I was only 31cm and I hadn’t grown since my last check-up. They told me that she had stopped growing for some reason and they wanted to induce me that day. So I was induced that afternoon, and once I started to go into labour Kayla’s heart rate kept slowing with every contraction. They were worried about the stress it was putting on her so they prepared me for a c-section, gave me an epidural and then suddenly she started coming out! Thank god I didn’t have to have a caesarian!!
Kayla Jade was born on 28/1/08 at 1860grams (approx 4.1pounds). She was put into special care because she was so tiny. The doctors told me she had IUGR (intrauterine growth restriction) which basically means she stopped growing in my womb. But they couldn’t explain to me why it had happened. I was a non-smoker, non-drinker, and I had the perfect diet whilst I was pregnant.
In the next three weeks whilst Kayla was in special care we had A LOT of problems breastfeeding. All the nurses would say that it was just because she was so tiny and that she would get it soon enough. She would just cry and stiffen her whole body up and push away from me, she was so strong!
All the nurses commented that her cry sounded like a little pussycat, everyone that saw her said that too. But still no-one picked up that she had Cri-du-Chat. She had some small issues whilst in hospital, talipes of both of her feet which is fine now, and she had jaundice for 2 days where she was under the phototherapy lights.
She was finally discharged three weeks later just over 3kgms, and still having difficulty breastfeeding but she was putting on weight. She seemed to develop normally up until she was about 7 months old. All the other babies were getting too far ahead of her and she was starting to do this funny head shaking thing. I was also worried about her head circumference, the doctor didn’t even realise she wasn’t even on the chart for her age group! So I got a referral to a pediatrician.
The pediatrician wanted her to get an MRI and blood test to see if we could figure out the problem. After the MRI she had problems breathing so she was admitted to hospital. She had croup, stridor and bronchiolitis. She was 10months old at this stage.
Whilst we were in hospital we met up with a new pediatrician (Dr Ian Robertson)- he was lovely! We then got the test results back from her MRI and he told me that her brain was underdeveloped. I had no idea what exactly that meant for her! All I was told was that she will probably not walk, talk or be able to care for herself. That was a devastating day for us.
We found out from the paediatrician about a week later that she actually had Cri-du-Chat. We were told a little about it and also that it was a syndrome that was quite varied in outcomes.
We then decided, after going through countless websites and information, that we would keep positive about the situation. Even though we knew the worst outcome, we would try and help her achieve the best!
We met with a geneticist and found out that we are not a carrier of the syndrome.
Kayla is going to physio every three weeks and she is doing really well.
She is now 15 months old, 8.3 kgs, she can sit up for a few minutes before falling, she gets on all fours and humps the floor… this is very amusing, she can stand leaning up against something for a few minutes unsupported. She say’s mumma and bubba, has not much problem eating solids anymore although she used to gag quite a bit.
She does get constipated, the poor little thing! And she just recently had bronchiolitis again!!
Kayla LOVES music, banana smoothies, cuddles, baths, and getting attention from anyone! Everyone loves her and thinks she’s adorable…. but who wouldn’t! She is a very happy child.
I hope I can meet some families that have children with cri-du-chat, whether they are babies, young children or adults. I’d love to have a support network for when no-one else can understand. We want to know as much as we can to help Kayla reach her full potential and we would also like to offer support and hope to other families that have received this diagnosis about their child.
Hope you like the pictures of Kayla. She is our world and we wouldn’t change ANYTHING about her. She is very loved. The most beautiful girl in the world, our angel.
Laura, Daniel and Kayla