Birth and diagnosis story

Birth and diagnosis story




I was born on 1st December 1998, my birth didn’t quite go  as planned. I was due on 6th January 1999. My mum’s waters had broke at 2:20 am and she was rushed to hospital. They gave her an injection to try and stop me from coming, but it had failed to work and my Mum started contracting at 4:10. After just 3.5 hours I was born, but didn’t cry. I weighed 5lbs 4oz. I was struggling to breathe, so I was taken straight to an incubator and hooked to a breathing machine and feeding tube. My parents weren’t allowed to hold me until I was 2 weeks old, all they could do until then was hold my hand through a hole in the incubator. When I was around 6 weeks old ( pretty much my due date ) I was finally breathing  and feeding independently and aloud to come home for the first time. 

 Around a week before I went home, doctors decided to do a scan on my brain because I was a premature baby and it revealed I had suffered a brain bleed. They warned my Mum and Dad that I may have developmental delays, but they weren’t sure. 

At first I seemed to be developing normally, but by the time I was 6 months old it was clear that something wasn’t quite right. When I would be picked up, my legs would cross. I held my hands in a constant fist and wouldn’t reach out for toys. When I was having a bath, my hips would suddenly dislocate and then go back in the normal position.

My parents took me to see the GP and he referred me to a paediatrician and a physiotherapist. I was assessed and was primarily diagnosed with Cerebral Palsy, but didn’t know for sure, so referred me for an MRI. Finally at 11 months old it was confirmed that my diagnosis was Spastic Quadriplegic Cerebral Palsy. At the time I had very bleak prognosis. I was not expected to ever walk, crawl and would have severe learning difficulties.

This diagnosis was obviously a shock to my parents, but also a relief. My early diagnosis  helped me get all of the early intervention. And I surprised everyone and sat up independently at 14 months, crawled at 19 months, walked with a K - Walker at 25 months and walked independently just before my 4th birthday. I’ve also learned how to read, write and count, all at a mainstream school with only mild learning difficulties. 

So for any parents out there, who have a child recently diagnosed with CP, try and get them as much early intervention as possible because it will help them achieve the things that they aren’t expected to do. I will talk more about how CP affects my life now in another blog.

Please share to any new CP parents out there.

See you tomorrow  x

Comments

Post a Comment

Popular posts from this blog

I can no longer walk unaided! 😢

This is a tough one This is such a difficult blog to write. Today I woke up at 10:45 as normal. I can no longer walk unaided.  Yesterday I could take 8 steps before loosing my balance, now I can take none.  I stood up and tried to take a step, but I just fell. I had managed to pull myself up again using my bed (I lost the ability to do it with just my hands 2 weeks ago). So once I got up again, I tried walking again and fell again. I realised that my ability to walk unaided had just gone. I shouted of my Mum to come and help me walk to the bathroom. We were both in tears. I went downstairs on my bum, as I felt it was safer and my Mum helped me to the kitchen table. As soon as my Mum had given me my breakfast, she immediately rang my private physio. Thankfully my physio had a free slot and came to see me this afternoon. She brought a pair of crutches with her for me to try out, but due to my lack of grip in my hands, I wa...
Read more

My future, is this common?

Up until recently my mobility has been pretty good. I was able to walk quite well, just on tiptoe. Even though I have always tired quite quickly when walking, I’ve always refused to use my wheelchair, unless I’ve been in pain. This is because I didn’t  want to loose my strength, my independent walking and I found wheelchairs ugly and unattractive ( I still do ). Over the past 9 months, I’ve found my mobility suffer quite a lot  to the point where I can’t walk any distance really without being in agonising pain. I’m falling every 15 to 20 steps and this is continuing to decrease. Just 2 weeks ago, I could do around 50 steps. Stairs are now almost impossible. I have always been very strict about doing all of my stretches and exercises, but my legs have just become so tight. I don’t understand why this is because I’ve always read that Cerebral Palsy is non progressive. I’m now using a wheelchair constantly, when I’m not at home. As I just have a manual wheelchair ...
Read more

Fun activities to improve your child’s fine motor skills

Here are a few ways to improve fine motor skills through play  Lego bricks is a really good way to help with grasp and finger dexterity. All children enjoy playing with Lego. Get them to build a tower and then take take it apart again. By taking it apart again they have to use strength. If the regular bricks are too difficult, try Lego Duplo.  For children over the age of 5 and who are slightly more advanced, Hama beads is good.  Ask them to make pattern or a picture. This will help develop grasp. The nice thing about these are that when they are finished, you can iron it and save their design. This activity is definitely more fiddly and may get a bit frustrating. It will also help with holding a pen correctly, as your child will have to use their pincer grip. Another activity is play dough, most kids enjoy this. It will help develop their hand strength. You can get them to roll some of the dough out into a ball and squeeze. Just generally playing with ...
Read more