Saw a Spina Bifida baby born today

Jolie, BSN · Aug 30, 2005

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.

We understand completely what you mean by saying you were "lucky" to have witnessed this delivery. Just don't phrase it that way to your non-nursing friends!

The neural tube is formed very early in pregnancy, before many women even realize that they are pregnant, so those with diets poor in folic acid are at risk for neural tube defects. There is also a genetic link unrelated to folate intake, and increased body temp in mom can result in these defects as well, such as fever early in pregnancy, or excessive use of hot tubs and saunas.

Regardless of the cause, it can be a devastating birth defect, with life-long complications. The defect wll be surgically closed as soon as possible, and a V-P shunt placed, which will need revision as the baby grows. PT will be initiated early on, but it does not sound like this baby will have a good prognosis for normal or near-normal use of her legs. Bowel and bladder control may also be an issue. These children also develop latex allergies at an unusually high rate, so you may find that she will be cared for in a latex-free environment.

I'll say a prayer for her!

**RosesrReder, BSN, MSN, RN** · Aug 30, 2005

Sad for everyone in general, but it must have been quite an experience for you.

wannabeL&D73 · Aug 30, 2005

I realize this may seem like semantics, or just being PC...and maybe you are aware of this and just were in a hurry typing, which of course is totally understandable. But it is very important to those in the disability community to use people-first language, and I strongly believe that the medical community especially should make the effort to respect their wishes...so instead of saying a spina bifida baby, or a down syndrome baby (or even worse a Downs baby) please try to be conscious of saying a baby with spina bifida or a baby with Down syndrome. Not trying to be nitpicky, but it is really important to those affected. Thanks for reading!

http://www.state.sd.us/dhs/ddc/kathysnow.htm

Shannon

BORI-BSNRN, BSN, RN · Aug 30, 2005

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.

Yes as a nurse must be very interesting to have the experience to see a congenital condition and also sad at the same time. By now i don't have any experience like that but i can tell that my sister have that condition" Spina Bifida" Meningocele she's 29 years old and she's the angel of the family :) We feel very lucky that she's still with us, Thanks God!! She have a beautiful face with a pair of gorgeous blue eyes that i've never seen. She was my encourage to be a nurse.

Bori

rn/writer, RN · Aug 30, 2005

I have a grandson with SB. Even though he has had many complications, he is a delight to our entire family.

Joseph will be nine in a couple of weeks and that is amazing considering all he has been through. He was born at 32 weeks d/t his kidneys beginning to shut down and not producing enough amniotic fluid. We had known since his 20-week ultrasound that he had SB and, fortunately, he was being monitored with continuing ultrasounds every ten days or so. Had this not been the case, we might have lost him in utero.

He was 3lbs. 10oz. at birth and had the myelomeningocele repair (L 4-5, S 1-2) at 24 hours. The VP shunt went in within that first week. He dropped down to 3lbs even and looked so small and vulnerable, but we got a hint of his strength when, in the NICU, he continually pulled out his NG tube. This was during his first two weeks of life.

He went home just shy of one month. But, at six weeks, he crashed. He had to be flighted in to Children's Hospital from a small rural facility and nearly died en route. His core body temp was 91 degrees! He had Arnold Chiari II malformation which can cause an overgrowth of the cerebellum. This in turn compresses the brain stem and can cause death if not caught quickly. He had an emergency decompression and was in the PICU for weeks.

He spent about 8 months of his first year (off and on) inthe hospital. And over the years, he has had many more surgeries..

The good news is that he is a happy kid, healthy in spirit if not in body. He has a wicked sense of humor and has a growing fan club at Children's Hospital. He is behind academically. We think this is a combined result of his prematurity, his many hospitalizations, the AC II malformation itself, the increased ICP when his shunts fail, and various other factors. But despite his limitations, he is bright enough to try to bribe docs and other medical staff to try to sneak him out of the hospital. He also loves to wear ties and belts, pagers, cell phones, and keys because these are the trappings of power. We don't know whether he will eventually walk, but he will be mobile in some fashion.

He is a great kid and our family has become stronger and more capable and compassionate for having had him around.

A prognosis given only in medical terms is incomplete. Families who give birth to a child with SB should meet other families who have lived with their kids for a while. My grandson is on the more severe end of the scale and yet his life is worthwhile.

Hope this gives you a well-rounded view.

Miranda

ljds · Aug 30, 2005

A prognosis given only in medical terms is incomplete. Families who give birth to a child with SB should meet other families who have lived with their kids for a while. My grandson is on the more severe end of the scale and yet his life is worthwhile.

THAT is a point worth repeating. THANK YOU for sharing your story, and for accentuating that the MEDICAL prognosis is only part of the picture.

Thanks, too, to the OP; I have never attended a birth where the babe was born with any sort of neural tube defect, and I'm not quite sure what to expect. Thanks for sharing.

Lori

allnurses Guide · Aug 30, 2005

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

RaeT,RN · Aug 31, 2005

Of course I would NEVER say I was lucky to have seen a baby with spina bifida to anyone BUT another nurse, and I am upset that I came off the way I apparently did. I had hoped that you all would understand where I was coming from. I am a very compassionate person, and am sorry if I offended anyone with my post. I certainly did not mean to. Do not think that I did not see that mother and her husband and her sister cry - I am not insensitive and understand that the medical picture is not the whole picture. Forgive me for not using the right words, or at least not using them in the correct order. This forum has been a great avenue for me to share my experiences on the floor and receive feed-back and answers to questions. I did not mean to strike the nerves of anyone and was simply asking for more information. It is very hard for me to think with my brain and not with my heart, and that was exactly what I was trying to do in asking about the prognosis. Thank you for your heart-felt responses.

wannabeL&D73 · Aug 31, 2005

Of course I would NEVER say I was lucky to have seen a baby with spina bifida to anyone BUT another nurse, and I am upset that I came off the way I apparently did. I had hoped that you all would understand where I was coming from. I am a very compassionate person, and am sorry if I offended anyone with my post. I certainly did not mean to. Do not think that I did not see that mother and her husband and her sister cry - I am not insensitive and understand that the medical picture is not the whole picture. Forgive me for not using the right words, or at least not using them in the correct order. This forum has been a great avenue for me to share my experiences on the floor and receive feed-back and answers to questions. I did not mean to strike the nerves of anyone and was simply asking for more information. It is very hard for me to think with my brain and not with my heart, and that was exactly what I was trying to do in asking about the prognosis. Thank you for your heart-felt responses.

Rae, I hope I didn't upset you. You are clearly a compassionate and caring nurse and that shows. I am sure that everyone understood what you meant and that it was a learning experience--I certainly didn't perceive you as being insensitive.

I just saw it as an opportunity to put in my two-cents about people first language, because I know so many medical people are unaware of how deeply important it is to the individuals and families affected by disability.

And thanks to everyone else for sharing your personal experiences, it is clear that some people in our society perhaps should reevaluate how they measure quality of life.

Shannon

ljds · Aug 31, 2005

Hmmm, I'm not sure why you are feeling attacked and judged. I don't see any posts that should make you feel so defensive. As far as I can tell, no one thought you were out of line, and everyone was trying to help you by giving you (and anyone else who reads this forum, like myself) their experiences and information.

Lori

RaeT,RN · Aug 31, 2005

I will admit that I got a little defensive because in no way did I mean to come off in a flippant manner about something that is not a light matter whatsoever. Sorry about that.