Join the Meeting Place for Moms!
Talk to other moms, share advice, and have fun!

(minimum 6 characters)

Mom Confessions Mom Confessions

positive for spinal bifida

Anonymous
Posted by Anonymous
  • 39 Replies
What was the outcome when your child was born if you tested positive for spinal bifida?
Posted by Anonymous on Mar. 4, 2014 at 4:31 PM
Add your quick reply below:
You must be a member to reply to this post.
Replies (1-10):
Anonymous
by Anonymous - Original Poster on Mar. 4, 2014 at 4:36 PM
Bump
catngabsmom
by Silver Member on Mar. 4, 2014 at 4:42 PM

My children don't have SB, but my oldest dd's best friend does. She had her first surgery when she was 20 weeks in utero, she has had subsequent surgeries since birth, she also has scoliosis in her spine, it is S shaped, so she wears a brace and has some supports also on her wheelchair. She did have extensive PT/OT and speech from 0-5, she still receives PT/OT, but is in all mainstream classes with no academic accomodations. She will always be in a wheel chair, she has no feeling below her waist, so she wears a catheter, is prone to infections, colds and has occasional seizures. HTH

Anonymous
by Anonymous - Original Poster on Mar. 4, 2014 at 6:30 PM
Scary. I pray that it is not that severe.

Quoting catngabsmom:

My children don't have SB, but my oldest dd's best friend does. She had her first surgery when she was 20 weeks in utero, she has had subsequent surgeries since birth, she also has scoliosis in her spine, it is S shaped, so she wears a brace and has some supports also on her wheelchair. She did have extensive PT/OT and speech from 0-5, she still receives PT/OT, but is in all mainstream classes with no academic accomodations. She will always be in a wheel chair, she has no feeling below her waist, so she wears a catheter, is prone to infections, colds and has occasional seizures. HTH

Anonymous
by Anonymous - Original Poster on Mar. 4, 2014 at 7:13 PM
Bump
catngabsmom
by Silver Member on Mar. 4, 2014 at 8:44 PM
2 moms liked this

I am sure as the parent and primary caregiver it is scary at times and a lot of work, but she is just E to me and to my daughter. They laugh together, do stupid girl stuff together, go swimming together, complain about algebra together, etc. E goes camping with the family, they go to Florida several times a year and do fishing charters, she swam with the dolphins at Seaworld, she still gets sassy with her mom and does most everything other 12 yo girls do, she just does it in a wheelchair. The surgery when she was still in utero was what has given her the quality of life she has now, she has had a few other surgeries since birth, but all were to help her get to a better place physically than she would have been and two of the surgeries were for placement of her catheter so she can be more independent in her bathroom necessities and not need to wear a diaper. E, her family, and her medical/educational/therapeutic team see no reason why she wouldn't be able to go to college, have a career and continue to live life as other people without SB do.

Life is scary, tomorrow will always bring something we never thought we would have to do, how you learn and take the chance is what gets you through! Stay strong!!

Quoting Anonymous: Scary. I pray that it is not that severe.
Quoting catngabsmom:

My children don't have SB, but my oldest dd's best friend does. She had her first surgery when she was 20 weeks in utero, she has had subsequent surgeries since birth, she also has scoliosis in her spine, it is S shaped, so she wears a brace and has some supports also on her wheelchair. She did have extensive PT/OT and speech from 0-5, she still receives PT/OT, but is in all mainstream classes with no academic accomodations. She will always be in a wheel chair, she has no feeling below her waist, so she wears a catheter, is prone to infections, colds and has occasional seizures. HTH


Erica


Mom to
Caterina-12
Gabriella-10.5
jb0520
by Platinum Member on Mar. 4, 2014 at 8:45 PM
Here's a bump, I wish you the best of luck ♥
AuntieM
by Gold Member on Mar. 4, 2014 at 8:57 PM
3 moms liked this

My granddaughter has Spina Bifida. She walks with a limp because one leg is shorter than the other and she has a two inch lift on her shoe. She has a big lump on her back that used to be twice it's current size. Half of it was removed when she was four months old. The remaining lump will never be removed because her nerves are twined through it. She has no muscle from the knee down on her bad leg and she will have to wear a brace all her life. She has bladder problems and will need to be catherized twice a day soon. She is involved in all decision making for her treatment. She is nine.

She is also very active, intelligent, creative, and loving. She has a natural desire to make people happy. She is outspoken and does very well at conversing with kids and adults. I am very proud of her and the way she doesn't let her condition stop her from living life to the fullest.

Anonymous
by Anonymous - Original Poster on Mar. 4, 2014 at 10:01 PM
Bump
Anonymous
by Anonymous 2 on Mar. 4, 2014 at 10:14 PM

Are you pregnant and their testing?

Anonymous
by Anonymous 2 on Mar. 4, 2014 at 10:16 PM

They're *** sorry :)

Quoting Anonymous:

Are you pregnant and their testing?


Add your quick reply below:
You must be a member to reply to this post.
Join the Meeting Place for Moms!
Talk to other moms, share advice, and have fun!

(minimum 6 characters)