discussion title:
How to put this into words
message #:
2653.2 in response to 2653.1
date:
10/22/2004 12:53 am
First let me say congratulations of your girlfriend's pregnancy. Hearing the words "spina bifida" can be hard to hear but let me tell you that it's not a death sentence for your precious baby.
The words "spina bifida" mean "open spine." So somewhere on your baby's spine there is an opening where nerve endings are out of the spine. I'm not sure what you mean when you say "the worst kind." And "on the skull" must mean your baby also has hydrocephalus (cerebrospinal fluid on the brain). Having hydro is quite common in children with SB.
You've asked about surgery and yes there is a procedure done at Vanderbilt University in Tennessee where they can go in to the mother's uterus and close the baby's spine before the baby is born. It's a risky surgery and it's still not known if it really helps make the SB any less severe when it comes to nerve damage.
Please know that all of this is overwhelming but the first time you hold your baby in your arms you'll know it's all worth while. The national SB site can answer alot of your questions as well so you may want to read some things on there. (www.sbaa.org)
On a personal note, let me tell you about my daughter who has SB. Her lesion is around her 4th - 5th lumbar region. The spine is broken down into 4 regions (from top to bottom it's cervical, thoracic, lumbar and sacral). She was also born with hydrocephalus. The day after her birth she had her spine closed and a shunt to drain the excess fluid from her brain. She spent 12 days in the hospital before we could bring her home. She had early intervention therapy from birth - 5 yrs old and then started regular kindergarten. She walks with the help of leg braces and a walker and sometimes uses a wheelchair. Please know that I love my daughter just like I love my 14 yr old son who is a typically developing child.
I know all of this is overwhelming and alot to take in but I'm so glad you found us here! Take a look at our homepage and see all the things that my daughter does!
(http://hometown.aol.com/bendcoles/index.html)
If you have more questions please ask away!
