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Cerebral palsy in one twin(4 Posts)
I've got 7 month old twins and one has been diagnosed with probable cerebral palsy as he has some damage to his brain. Obviously we don't know at this stage how it will affect him & we are hoping for the best. However I'm finding it increasingly hard because his brother is developing at a much faster rate & also seeing other babies of a similar age is just making me really sad. Also he cries so much of the time I end up practically ignoring his brother! Does anyone have experience of one twin being disabled and the other 'normal'?
Hi Helez. Yes I do. I have 7 year old twin girls and one of them has CP and the other one doesn't. I had a difficult pregnancy with lots of complications and they were born at 33 weeks. I had a big twin (twin 1) and a smaller twin (twin 2). Ironically it was twin 2 that we were most concerned about when I was pregnant and when she was born, lower birth weight and longer neonatal stay and she is perfectly fine. Twin 1, bigger birth weight, discharged from neonatal after a shorter stay and as far as we were concerned was fine. It was only when she was missing her milestones that we thought that something wasn't right but hoped that she was just behind because of being premature, that's what I kept telling myself anyway couldn't believing that something was actually wrong.
She was referred to physio at 18 months and referred or an MRI. The MRI said she had white matter loss of prematurity and was diagnosed at CP at 21 months. I have been there were you are comparing her against her twin and against other children at baby groups and at nursery and thinking how unfair it was. I think it was easier to hide it when she was younger because obviously she could be carried and we had a pram but as she got older and still wasn't walking when everyone else was it was difficult. She started walking at 2 1/2 while her sister started at 19 months so there was a big gap when one was walking and the other not.
My dd now goes to mainstream school with her twin with a 1 to 1 assistant and is doing well. I remember the early scary days. If you have any questions please feel free to ask me.
That sounds like us. Twin 2 was the poorly one in NICU whereas Twin 1 seemed healthy. They were born at 31 weeks (after no problems in my pregnancy) so they both had routine head scans which showed up the problem in Twin 1.
Did both of yours go to mainstream nursery before school? I'm supposed to be going back to work in January (when they'll be one) but I'm really worried twin 1 will be hard to manage for the childminder. I think it's the not knowing which is the worst as the range of cp is so vast. Does the worrying get any easier?!
Hi Helez. Yes both of mine went to a mainstream nursery. They were there before my dd had a diagnosis and after that she got 1 to 1 support. They are now both in mainstream primary school and she has 1 to 1 support there too. I had the same concerns too about how I would cope and about how she would cope. I think my dd cope with her disability well and just wants to be the same as other children her age.
I did go back to work but reduced my hours. I think you need too for your own sanity. You will be entitled to DLA. I get it and the extra money is invaluable. At the start we had so many appointments with physio, special equipment, Drs, hospitals I seemed to be running to things constantly.
I don't know if the worrying does gets easier. It's all different stages. My dd is an independent walker but would tire easily and things others would take for granted like going to the supermarket or park or a family day out pose difficulties which most people wouldn't think about.