i just found out my baby has sb

[lolathechecker]

im 6 months pregnant and i am having a little girl with sb. she has hydrocephalus and her lesion is in the lower lumbar vertebrae. i am trying to sign up for this research group called "moms" has anyone heard of them? (spinabifidamoms.com) i think i am really in a strange way blessed to have a baby with sb, because im in college working towards a research science degree. my two main interests are neurology and genetics/birth defects. i just found out last thursday about the baby, so spina bifida research may be my direction. ;) ok, now i have some questions: does anyone know if you can breastfeed babies with sb? and since alot of them cant sit up, has anyone tried a bumbo seat? how do they do in those? and how about those sling carriers, are they ok for their backs? i bought one, because i heard the normal upright carriers were bad for baby's hips. also, my doctor told me my babys lesion? was inthe lower lumbar, does anyone know what that means as far as her being able to walk? we saw he moving her legs and feet independantly on the ultrasound. is that a good sign?

sorry to ask so much, but my inquisitive mind must know!
thanks
lola :)

[Barb]

Hi and welcome to a whole new world ;)

ok, now i have some questions: does anyone know if you can breastfeed babies with sb? I did. I have not ever heard that you can't. I had to pump a lot for him while he was in NICU.
and since alot of them cant sit up, has anyone tried a bumbo seat? how do they do in those? Had one. Worked great.
and how about those sling carriers, are they ok for their backs? i bought one, because i heard the normal upright carriers were bad for baby's hips.Did not use one of these but not for any real reason. Just never seemed to be comfy to me,
also, my doctor told me my babys lesion? was inthe lower lumbar, does anyone know what that means as far as her being able to walk? we saw he moving her legs and feet independantly on the ultrasound. is that a good sign? Yes. In terms of walking the baby will have a much better chance than someone who had a higher lesion.

sorry to ask so much, but my inquisitive mind must know!Anytime, We all understand.,

[lolathechecker]

at first i was really scared about having a baby with sb, i even considered, dare i say it, terminating the pregnancy. but i did my research and have learned that the outlook is not nearly as grim as i had origionally imagined. now, one question i forgot to ask: do all babies with sb have incontinence problems? and thank you so much for your time and concern. i think my girl is going to be ok. she moves alot and kicks really hard!

[wendypal]

Lola,
Congratulations on your baby girl. I read Barb's reply and I agree with all her answers.
I breastfed Sam, but like Barb pumped a lot in the beginning while he was in NICU. I started breastfeeding at day 3.
I did use a sling for Sam. As soon as his incision was healed it was great. I vacuumed with him in the sling, folded laundry, took care of my other 3 kids. It was great!!
Sam pretty much did normal baby stuff. He did sit up later than my other kids. We actually put him in a milk crate, with pillows in front of him. It worked really well.
Also, as far as I know most kids with sb have bowel and bladder issues. I'm sure not all of them do. Anyone else know a better answer??
I will also tell you, that Sam is an incredible blessing in our lives. He is happy and healthy(other than the sb stuff) He is vibrant and does walk with afo's ankle braces . He attends regular school and is very bright. He uses a wheelchair for long distances, etc.
Well, I'm sure you will have more questions, I know I did and still do. Please feel free to ask away.
God Bless,
Wendy

[kali]

welcome and congradulations! You sound like you will be a great mother! After the closure on the back and the placing of a shunt, my life with my sb son has been basically the same as the rest of my kids. He sat down later and began to walk at 4 years old. I found it easier and less stressful just to treat him like the others,today he doesnt really think he is different then others. He is very intellegent and has a great personality, and we are blessed to have him in our lives. look foreward to getting to know you

[Barb]

I forgot to add that the research group that you mentioned has been around a long time but I have never heard of anyone actually participating in it ;) Let us know how your experience goes with it!

[Spokie]

Hi Lola!

Congratulations on your pregnancy, and welcome to the wonderfully blessed world of SB parenthood!

My son has a high lesion (T10) and is completely paralysed, but even he managed to sit up by himself before his first birthday. In the beginning, his best spot was sitting in a box with pillows; they really enjoy being able to see the world from a different angle.

The fact that your child is a strong kicker, is a very good sign.
All the best for the rest of your pregnancy, and good luck with your research work.
Make some breakthroughs for us, okay!!

Spokie.