7 replies to this topic

[proudmummy]

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

Edited by proudmummy, 22 August 2009 - 08:33 PM.

[qbounce]

Welcome to the site Mummmy,
I hope you find what you're looking for, although I'm petty sure you may not get the answers here.

Good luck to you on your searh. All the best to you and your daughter.

[CollegeGirl]

I'm sorry that I don't have anything to say to help you! I've never heard of anything like that. I'm sorry about her injury, but thankfully it sounds like she is growing stronger and stronger each day! I hope that as she gets older she will continue to gain movement. I'm very curious about this and would love to hear updates so please stay with the site and let us know how she is doing!

Good luck finding some information and I wish you and your family all the best!

[Lucydog]

Hi

Im so sorry to hear about this, it must be very unusual. Id suggest it might be similar to being born with Spina Bifida, perhaps you could check that out?

Sorry I cant offer any more insight but I think we are all wanting to know how you all progress.

Keep smiling she will be beautiful

L

[buff]

can your pediatrician offer some sort of support from people in the same position? it almost sound temporary due to the fact that she seems to be moving more and more all the time. i don't think any c6 patients can move anything from the waist down. that is considered a quad. it sounds like she is just so much fun and is learning about her world around her as any baby would. congrats!

[moondrops]

proudmummy, on Aug 22 2009, 03:21 PM, said:

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

Hello there! I am so sorry for what you are going through. There is a support forum for parents that have children with similar systoms at ivillage. Just put in hypotonia, then click on dicussion forum.
Your daughter seems to be making great progress and I am sure we here would love to be kept updated but you will probably get better help from parents that are going through similar struggles.
Good luck!
Catherine

[proudmummy]

Thanks you for your responses and suggestions so far...that's really helpful and will explore some of those options!

[Taylor9]

Good Luck with your little baby daughter,hope she will get stronger every day. Margaret.