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Raising Special Needs Kids Raising Special Needs Kids

Spina Bifida

Posted by on Aug. 3, 2013 at 1:14 AM
  • 19 Replies
Hello there. My name is Caitlin, and I'm currently 27 weeks pregnant with my first child. I've been with my child's father for about a year and a half now. We were actually very excited when we found out we were expecting despite the fact that we are young considering I'm only 18 and he's 20. We were even more excited when we found out we are having a little baby girl whom we decided to name Aaliyah. Then just about a month ago we received heart breaking news that Aaliyah has a birth defect called Spina Bifida which is when the baby's back doesn't close up during development, leaving a lesion that looks like a bubble on the baby's back. It caught us completely off guard because throughout my pregnancy all my blood tests, and ultrasounds came back fine. It was until we had an ultrasound to find out the sex when the doctor discovered something was wrong. It's really hard to digest the fact that there is something wrong with my child. When someone becomes pregnant they usually just automatically assume their baby is going to be fine and healthy. My boyfriend and I really been pulling each other through this, and trying our best to stay strong and think positive. I live in Arizona, and so I am going to have to be making 4 hour long car rides to Phoenix to see specialists, and I was also informed that I have to have Aaliyah in Phoenix away from all my family, because she's going to need surgery as soon as she's born to remove the bubble on her back. I had my first appointment in Phoenix yesterday, and the doctor confirmed that she has L5 Spina Bifida. I'm not really educated on the levels yet or the outcomes depending on what level the spina bifida is. The only thing the doctor really told me is that she's most likely going to need some type of aid to help her walk. It's a very painful situation right now for my boyfriend and I emotionally because we love so much, and we don't want her to be treated differently or anything growing up. I'm just wondering, are there any other moms out there who have children with Spina Bifida? How are they developing, and living their lives? Are there any moms who had babies who were also L5 that could give me some type of advice of what to expect? I'm just very worried, and desperate for answers and support.
by on Aug. 3, 2013 at 1:14 AM
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Replies (1-10):
mlogsdon
by on Aug. 3, 2013 at 1:22 AM
2 moms liked this
Welcome!! glad you found us.

I do not have a child with spina bifida. But my cousin has spina bifida, not sure what her level is. she's 30 years old, the sweetest thing in the world, in a wheelchair and living in her own apartment (independent living facility) and has an active social life :) boyfriends, friends, invites me to dinner frequently. She is very delayed mentally, does not understand that I am literally on the opposite side of the country, but everyone that knows her, loves her.

A friend of mine has a son with spina bifida and he is about 14 months old. Crawling, jabbering, goofing off, he's really a joy to be around.
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MizzMathers
by on Aug. 3, 2013 at 2:46 AM

How did your friend deliver her baby? Did she have to do a c-section because the baby had spina bifida? How long were her & baby in the hospital?

darbyakeep45
by Darby on Aug. 3, 2013 at 7:10 AM
1 mom liked this

Welcome to the group mama!

cnsmom
by Bronze Member on Aug. 3, 2013 at 9:44 PM
1 mom liked this

Hi.  I'm Rhonda, our 4 yr old little girl has spina bifida.  L4-L5  has hydro and has a VP shunt for that, she also has scoliosis (curve in her spine) she has bladder and bowel issues, we cath her 4x daily.  She is in a wheelchair.  She has no mental delays at all.  She was a very early talker, and is so smart and funny, and the sweetest thing ever!!

 

I live 2 hours from her hospital.  She has the mylomeningasil (her leision was open, there wasn't any covering)  She had closure surgery at 2 days, and a vp shunt put in on day 5.  She got to go home after 11 days, unfortunately 4 days later she got an infection and went back for 3 weeks.  They also had to do 2 more surgeries during that time. 

We had a c-section planned, but we didn't make it.  We barely made it to our local hospital, the nurses delivered, 2 min after being wheeled in the doors.  (she was our third, and I had pretty fast labors, but nothing like hers!)  She was breech, and there was other problems, but she did great.  I sometimes think that may be why she isn't a walker.  Typically L4 or L5 should be walkers.

The pregnancy was the hardest part, because you don't know what to expect, but once you see your beautiful little perfect baby, it gets easier.  Good luck with everything!!  If you have any questions feel free to ask.  I'll help in any way that I can.

mandee1503
by Amanda on Aug. 3, 2013 at 9:52 PM
Welcome to the group!
Linagma03
by Gold Member on Aug. 3, 2013 at 10:26 PM

Welcome to the group! I have no experience with Spina Bifida. 

I am sorry that you are going thru this. It is hard when there is something wrong with your child but learn what you can so that you are prepared as much as possible. You will never be completely prepared for everything but the more you know the less you have the total freak out sensations. It is hard but you can do it. I am keeping you in my prayers. 

Chelsey191
by on Aug. 4, 2013 at 12:45 AM
2 moms liked this
My BFF has spina bifida she is married and is wheelchair bound. I'm going to be her surrogate. She has been through a lot but she is smart as hell and really funny.
MizzMathers
by on Aug. 4, 2013 at 12:46 AM
Wow, it's so nice talking to someone who has already been through all of it. I didn't know you could give birth to babies with spina bifida naturally, I assumed you had to do it by c-section. That's so sad that she's not able to walk, but at least she's not mentally delayed. She's basically just like a normal kid except she's in a wheel chair? Will she have to be in special ed classes when she starts school because of the fact she can't walk?
Quoting cnsmom:

Hi.  I'm Rhonda, our 4 yr old little girl has spina bifida.  L4-L5  has hydro and has a VP shunt for that, she also has scoliosis (curve in her spine) she has bladder and bowel issues, we cath her 4x daily.  She is in a wheelchair.  She has no mental delays at all.  She was a very early talker, and is so smart and funny, and the sweetest thing ever!!

 

I live 2 hours from her hospital.  She has the mylomeningasil (her leision was open, there wasn't any covering)  She had closure surgery at 2 days, and a vp shunt put in on day 5.  She got to go home after 11 days, unfortunately 4 days later she got an infection and went back for 3 weeks.  They also had to do 2 more surgeries during that time. 

We had a c-section planned, but we didn't make it.  We barely made it to our local hospital, the nurses delivered, 2 min after being wheeled in the doors.  (she was our third, and I had pretty fast labors, but nothing like hers!)  She was breech, and there was other problems, but she did great.  I sometimes think that may be why she isn't a walker.  Typically L4 or L5 should be walkers.

The pregnancy was the hardest part, because you don't know what to expect, but once you see your beautiful little perfect baby, it gets easier.  Good luck with everything!!  If you have any questions feel free to ask.  I'll help in any way that I can.


Elyssa414
by Elyssa on Aug. 4, 2013 at 2:33 AM
1 mom liked this
Welcome to the group! I don't have experience with spina bifida, but I do have two disabled children. (And two "typical" children) they are all awesome and amazing, wheelchair, surgeries, developmental delays, and all! *HUGS*
cnsmom
by Bronze Member on Aug. 4, 2013 at 7:55 PM
1 mom liked this

Quoting MizzMathers:

Wow, it's so nice talking to someone who has already been through all of it. I didn't know you could give birth to babies with spina bifida naturally, I assumed you had to do it by c-section. That's so sad that she's not able to walk, but at least she's not mentally delayed. She's basically just like a normal kid except she's in a wheel chair? Will she have to be in special ed classes when she starts school because of the fact she can't walk? You can do a vaginal birth, as long as the dr agrees to it, and if the baby is cooperating. In our case we didn't have a choice, she was half way out before I got into the hospital. It was a very scary few minutes haha. Sometimes I get sad when I think about her not being able to walk, but it doesn't last long, because she is always so happy, and nothing gets her down. It did bother me really bad one day, because she told me that she wanted to be a ballerina, because she loves to dance. That was one time that I did shed a few tears. She is going to be in reg ed classes once she starts school. The teachers are already fighting over who is going to get her, and she won't go for another year. We have been going to the school 1 day each week (for one of her physical theropies, she has it twice and ot once every week) for a year and a half, so everyone is getting to know her pretty well. She talks to EVERYONE there, they just love seeing her come in. She is very small for her age, she looks like a 2 yr old, with a huge vocabulary, people can't believe it when I tell them that she is 4. We decorate her wheelchair, so the kids love to see it. One thing to remember, even though she doesn't walk it is normal to her, because crawling and wheeling is all she knows. It is her normal shes used to it and is perfectly ok happy with it. If you ever need to talk or want to ask any questions feel free to ask, I would be more than happy to try to help.
Quoting cnsmom:

Hi.  I'm Rhonda, our 4 yr old little girl has spina bifida.  L4-L5  has hydro and has a VP shunt for that, she also has scoliosis (curve in her spine) she has bladder and bowel issues, we cath her 4x daily.  She is in a wheelchair.  She has no mental delays at all.  She was a very early talker, and is so smart and funny, and the sweetest thing ever!!

 

I live 2 hours from her hospital.  She has the mylomeningasil (her leision was open, there wasn't any covering)  She had closure surgery at 2 days, and a vp shunt put in on day 5.  She got to go home after 11 days, unfortunately 4 days later she got an infection and went back for 3 weeks.  They also had to do 2 more surgeries during that time. 

We had a c-section planned, but we didn't make it.  We barely made it to our local hospital, the nurses delivered, 2 min after being wheeled in the doors.  (she was our third, and I had pretty fast labors, but nothing like hers!)  She was breech, and there was other problems, but she did great.  I sometimes think that may be why she isn't a walker.  Typically L4 or L5 should be walkers.

The pregnancy was the hardest part, because you don't know what to expect, but once you see your beautiful little perfect baby, it gets easier.  Good luck with everything!!  If you have any questions feel free to ask.  I'll help in any way that I can.



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