Noticing the first signs
Our son went into intensive care when he was born so we knew there were complications straight away. He was slightly premature and had trouble breathing and so the hospital undertook a routine ultrasound of his brain. They saw a bleed and following an MRI found he had polymicrogyria which means that his brain had not developed normally. They were not sure how this would affect him, but told us that effects could include speech and swallowing difficulties. He was also diagnosed with low muscle tone and hypermobility meaning he would have delays in being able to hold his head, sit unsupported, stand and walk. So, from the early days of our son’s life we saw lots of different people at the hospital like neurologists, geneticists and consultants from the intensive care unit. We still see lots of different professionals to help with our son’s development and investigations into his condition are ongoing.
Referral to community health services
Referral was quick and it happened when he was 4 months old. It was all a bit of a blur trying to manage all the things involved with being a new mum as well as trying to come to terms with the fact that our child was going to have a very different life to what we’d hoped for him. Our son’s pediatrician was very kind, but it was hard to answer questions when all I could do was cry. I sometimes wonder now if that was too early. Sometimes it felt it was very matter of fact to the health professionals, but this was my child they were talking about.
The physiotherapy team was amazing but the first visit was horrible. Our son was 6 months old; he should be rolling over, trying to push himself up, sit on his own. He couldn’t even hold his head up and all I could think about was ‘is he ever going hold his head up, stand, walk.’ We started to have home visits from the physiotherapist about once a fortnight. This support was invaluable - they would really listen to us and what we thought would work for our son, they helped us try new ideas and provided much needed positive encouragement.
Further involvement
We moved house when he was two and a half and this meant we had to change the team we were working with. We were really lucky as our Early Years Support worker also worked in South Bristol and she stayed with us. I think the continuity was a real plus. The group we now attend is great and we have found some parents that we can talk to. We can get tips about caring for our child or funding and equipment that might be available. We get a break too which can be really important. I love being with him so much but it’s really nice to be able to go off and have a cup of tea with other parents who have an understanding of our situation and know that the children are being looked after.
Our son hasn’t had a diagnosis but his nursery has managed to get funding for extra support and he now has 1:1 support. The nursery has been amazing and the communication between the health professionals and the nursery staff is really good and there are regular review meetings.
It’s worth remembering there is other help you can get outside of the NHS and you don’t always have to pay for it – there are sometimes assisted places. We talked these things over with our son’s Physiotherapist who wasn’t 100% in agreement but you have to make decisions that are best for your child. You know your child the best so sometimes you will have to be a bit more forceful to get what is best for them.
What happened next?
It can be really difficult. Hundreds of times I have lived in my head what I think his life might be like. I wake up sometimes with a sense of panic. I also imagine what life might have been like for him and I have had to come to terms with the fact that this may not be the case. We don’t know the answer. It is a type of grief, a sense of loss for something you never had.
He is a beautiful boy. He makes us laugh and he is so happy. He is cheeky and curious and we hope that he will one day be independent enough to be able to explore all the things he wants to with little help from us.
(Story details taken in 2014)
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