what should i know?

Question

my 10 week old daughter has spina bifida she is also a twin i know verry little about spina bifda and am haveing a hard time finding information about it any thing a doctor tells me goes in one ear as mumbo jump i cant understand and out the other as what the hell did they just say so if you have any wabsites or maybe experiences it would be great also i woiuld like info on how to help my son cope with his siter haveing a disability when hes older and doesnt understand why sissy gets to go to the dr with mommy but he doesnt and that type of thing thanx

Answer 1

When a baby is growing inside its mother, the spine and spinal cord are developing. But sometimes part of the spinal cord and spine don't grow the way they should, leaving an opening where the spinal cord may protrude outside the body. When this happens, a baby is born with spina bifida, a term that means "split or open spine." Because of the opening in the spine, the nerves of the spinal cord may be damaged. A spinal cord that's damaged may not be able to do the important job of getting messages to and from the brain. Usually when your brain says "kick the ball," the nerves of your spinal cord carry that message that tells your leg to kick. These messages may not be able to get through if a person has spina bifida. The person may not be able to move their muscles the way other people do. This is called paralysis (say: puh-ra-luh-sis), which means a person can't move some muscles or to feel things on some parts of the body.
Treatment for spina bifida depends on the severity of the condition. Most people with spina bifida occulta require no treatment at all. Children with meningocele typically require surgical removal of the cyst and survive with little, if any, disability. Children with myelomeningocele, however, require complex and often lifelong treatment and assistance. Almost all of them survive with appropriate treatment starting soon after birth. Their quality of life depends at least partially on the speed, efficiency, and comprehensiveness with which that treatment is provided. A child born with myelomeningocele requires specialty care. The child should be transferred immediately to a center where newborn surgery can be performed. Treatment with antibiotics is started as soon as the myelomeningocele is recognized; this prevents infection of the spinal cord, which can be fatal. The operation involves closing the opening in the spinal cord and covering the cord with muscles and skin taken from either side of the back. The most common complications are tethered spinal cord and hydrocephalus, which can have very severe consequences. Each person with severe spina bifida requires intensive and complex care by a trained and coordinated team.

Answer 2

Keep in mind that your son probably doesn't see his sister as "different". Kids are incredibly innocent, and he just sees that you care for her. If he is old enough to understand, explain Spina Bifida in an easy to understand manner and be matter of fact. Say, "Your sister's back is different from yours, that is why we take her to the doctor a lot. What can you do to help out?" Things like that.
www.nichcy.org/pubs/factshe/fs12txt.htm
www.sbaa.org
kidshealth.org/kid/health_problems/bone/spina_bifida.html

Here are a few websites that give facts about Spina Bifida and have stories of people living w/ this and who have children living w/ it.

Answer 3

My husbands younger sister had a daughter with spina bifida and she died at age 16 a couple years ago from a infection after receiving a kidney transplant.

If I were you I would search out every seach engine out there for information and locate a support group you will need it!
If the doctor is not talking to you about your baby's needs then find another one.

How is your faith? She is going to need surgeries and you will need to have a strength only God can provide.

Answer 4

I have a friend who's little boy has spinal Bifida. She is a inspiration. If you seriously need someone to turn to to ask questions let me know and I will send you her e-mail address.

Answer 5

Children are AMAZING, if you keep him included, teach him to help his sister, to protect her, take him with you to your appointments if possible so he doesn't feel left out he will be just fine, treat them equally, of course she will need extra care, but show your son that they are equally loved. I know is hard to cope ourselves as mothers sometimes but think about this... your daughter is so especial because she came to this world regardless of the condition she has. And SOMEBODY trusted you with her care and that makes you especial too, teach you son to sing, to read to her when he is older and he will feel so good that you trust him , good luck with everything.

Answer 6

Be truthful to your son and explain the sickness of her sister. It is only when you do this that he will gain understanding about a family situation. I hope the site below will be of help. Extending my prayers to your family.

Answer 7

try a google search for ' spina bifida '
depending where you are there is probably a state body that can help , eg:

http://www.sbaa.org/site/c.gpILKXOEJqG/b.2016945/k.2321/Spina_Bifida_Association_Web_site.htm

Answer 8

Try the health area of yahoo... They might have something about that...


I also hope that you're little can at least overcome some of it... I don't know about that myself... But hopefully it doesn't affect her too much...

Answer 9

http://www.webmd.com/hw/raising_a_family/hw169958.asp