6 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 - 08:34 PM.

[LisaU123]

Yes I know a little boy that the same thing happened. Drs determined he had a spinal cord stroke in the womb. He is 3 now and is paralyzed from the waiste down. Do you have a caringbridge site for the baby? I can see if I can hook you uup with his mom maybe talking to someone in the same boat would help.

[wheeliebear75]

Spnia-bifeda (sp?) although it is a different mechanism the effects on the children I would think would be similar; maybe talking with the parents of some of those kids would be of help at least in that the kids have similar problems & their experiences could still be beneficial to you & your family.

[proudmummy]

Thanks for your responses - a few people have mentioned the similarities with Spina Bifida so will explore that avenue at some point.

Am very interested in what you said Lisa...I'm not sure what you mean about a caringbridge site though, as I said I'm very new to all this! Could you explain please?? But I would be very interested in speaking to his mum, that would be helpful (I am in the UK so emailing may be a bit more cost effective!!!).

[Hikkakaru]

Thanks for your responses - a few people have mentioned the similarities with Spina Bifida so will explore that avenue at some point.

Am very interested in what you said Lisa...I'm not sure what you mean about a caringbridge site though, as I said I'm very new to all this! Could you explain please?? But I would be very interested in speaking to his mum, that would be helpful (I am in the UK so emailing may be a bit more cost effective!!!).

Caringbridge.org

Think MySpace for critical illness.

-Sam

[linda]

Hello and welcome,

My daughter is now 24 years old, she wasn't diagnosed with a spinal cord injury until she was 8 years old. Prior to diagnosis it was said she had Cerebral Palsy...later after learning her symptoms didn't go along with her diagnosis of CP I felt I need more answers so I found a Pediatric Neurologist at Childrens Hospital, Boston Massachusetts. After several tests and countless visits I finally was told my daughter had a Congenital C5 spinal cord injury. Again I went another several years unaware of her full diagnosis... not knowing that she had an incomplete center core injury...it wasn't until she was 19 that I learned of her exact diagnosis, that being a C5 incomplete center core injury. I also learned that her injury was caused by the use of forceps at birth. There was so much I wasn't told, I had to advocate for my self because doctors were not sharing the info that I need to know. Now my daughter is almost 25 shes doing wonderful, works a full time job has gone to collage and fits in quite well with society. People tell me all the time that I did a wonderful job with her considering the lack of knowledge I had about her true condition. I cant help but wonder how much stress and hart ache could have been avoided had I known from the very beginning.

[wcgirl91]

Hi,
I was born with a t7 injury at birth. I was two weeks late, aspirated maconium, my blood pressure fluctuated, i had a stroke, and a blood clot formed in my spine.