Saw a Spina Bifida baby born today

[RaeT,RN]

I was lucky (I feel slightly horrible to consider myself lucky to have seen this, but you all understand) to see a baby born today by c/s of course, with spina bifida. There was a meningocele and hydrocephalus; when they were feeling for fontanels, the meningocele was weeping out CSF. Poor baby! She had good flexion in her arms, though she was not moving them, and her legs were floppy and I assume paralyzed. How exactly do they correct the meningocele, and what kind of a prognosis is there for the baby? I really don't know much about them besides they are a neural tube defect and that folic acid prevents them. Also, I have to say that I am suprised that I saw this because of how everything grain and pasta is fortified with folic acid nowadays.

[ljds]

Don't worry about it, it's a tough subject; wanting to know and learn about things that are emotionally and physically difficult for others.

Everyone here understands that you are just trying to learn how to help people in this situation, and that is the hallmark of a good, caring nurse. I can't imagine anyone thought you were flippant or didn't seriously understand the ramifications of the disability.

We're all here to support, teach, and learn from each other.

Lori

[rn/writer, RN]

my niece has spina bifida. she is 17 years old and in high school. she has had bladder problems and self caths. she has also had the shunt replaced in her brain due to growing up. :) she can walk but her gait is effected a bit. she was a cheerleader in junior high.

the only problem i can see is that her parents were so frightened about the condition that they babied her - she would threaten to hold her breath if she didn't get her way and that really scared them. so, she got her way alot. when she stayed with me and started her little fit though, i'd just say "ok, hold your breath" and i'd walk away. she'd give me a little look making sure i was serious and then she would stop trying to manipulate her aunt steph.

steph

i had to laugh about this. our joseph (see previous post) owes much of his success to his mom. my daughter has always been the feistiest of our six kids. she doesn't take guff from anyone, including her ex-husband who had a hard time dealing with their two "normal" kids. he tried to be supportive of katie's efforts with joseph but he had a very dysfunctional upbringing and didn't have much to offer. this made katie all the more determined.

from the time joseph could crawl, katie put things just out of his reach and made sure he had to work his little body to gt them. she gave him extra time to eat but he had to feed himself as soon as he had the ability. she never let him use his disabilities as an excuse for being lazy or having an attitude. he gets disciplined with the other two when he disobeys. every year, katie has to speak with his teachers and aidesand therapists to let them know just how capable he is, or he will bat his big brown eyes and exploit the heck out of them. he crawls up and down steps at home (he has amazing upper body strength), pushes his own wheelchair (katie does not want him to rely on a motorized chair when he can do very well with the regular one), has chores he can manage, and is expected to be kind and polite.

joseph views himself more as inconvenienced than crippled and i know my daughter gets the credit for that.

btw, rae, i understood exactly what you meant when you said you were lucky to see this birth. it's an opportunity that doesn't often come along.

did the family know ahead of time that the baby had sb? i told you about my grandson so that if you ever get to work with sb parents again, you will have positive knowledge that such kids can live well regardless of their physical limitations. the families will have much to take in, even if they have warning from an ultrasound or alpha-feto-protein test. they may take comfort in having a nurse who knows that their kid can still have a good life, even if the medical details seem daunting. having seen this birth and having shared your experience with us and heard our stories, you will be better equipped to offer support and hope.

thank you for starting this thread.

miranda