Baby born with C6 S.C.I

[rocky711]

Hi everyone

I'm brand new to this site and just thought I'd post in the hope of getting some responses!!

I have a beautiful 6 month old daughter who was born with a spinal cord injury (c6 - t1). The cause is unknown as it happened while she was still in the womb (probably a week before she was born when foetal movements changed) but was possibly due to a spinal stroke. She has made massive progress since birth when all of her limbs were very floppy and she couldn't move them. She now moves her arms, hands and fingers perfectly and is developing fine motor skills, grabbing etc. Her legs have gained a little more movement and she can tense them, and wriggle her toes and move her feet. Prognosis is very uncertain due to her age, but we are keeping our hopes up at the same time as coming to terms with her disability.

I just wondered if anyone had ever come across this before...have you met anyone who has ever had a similar thing happen to them or a member of their family? I have scoured the internet and been in touch with a couple of sci charities but no-one has ever had experience of this - it must have happened before??!!!! There's lots of info about SCI occuring following accidents and illnesses, but never to an unborn baby.

ANY info would be considered useful

Many thanks

[Andy]

hi rocky,

welcome to the forums apologies for late reply. Your daughters case is the first I've heard of like this however that doesn't mean its not occurred before.  I do know of several cases of children as young as 2 or 3 injured in road traffic accidents, their treatment would probably be siimlar to your daughters.

it sounds like your daughter is making great progress all things considered, wherabouts are you located? We can put you in touch with your national association hopefully

Andy

[cate]

Hi Rocky.I wish all the best to you and your daughter, it seems very strange what can happen in the womb my  daughter is c5/6    which was not discover for some years    we think it was possibly due to a car accident    a few years previously,  at first they were thinking MS,  however      time moves on and she is managing very well, and can walk with the aid of crutches etc. why I mention this at    ROH   Stanmore       they did say it could have happened in the womb, and that it took    a long time to manifest itself.  I found that hard to take in, but it seems these  things can happen, So think  as postive as you can and keep hoping.