I have a friend from college who has it. She is dependent on either a wheelchair or some sort of braces and crutches combo. I don't know how to describe it. She lives a very full life. She is completely independent and has a great job. Hugs to you. Things have come so far in the last few years.
Sending you hugs! I was born with hydrocephalus (the fluid on the brain), which I know is pretty common with spina bifida. I have no first hand experience with spina bifida, but I know treatments for spina bifida and hydrocephalus have really advanced in the past 30 years since I had my first shunt surgery. Back when I was born, people acted like it was a death sentence, but I've had a very active, fulfilling life and my hydrocephalus has virtually no impact on my day to day life. And the treatments and advancements they have made now have only made things more hopeful and positive for us! Thinking of you!
((( hugs)))) The biggest hugs. I have no experience with SP but I am from Philly and had a very life-altering surgery through CHOP when I was 14 and they were pretty amazing. Even being that young I still remember the doctors, nurses, just an amazing hospital and believe you will be in the best of hands in this horrible time. I truly wish you all the very best.
No advice, just hugs, and if you come to CHOP you will be in excellent hands. I'm local, so if you have any questions about Philly or you want to reach out, PM me.
Post by snipsnsnails on Mar 18, 2015 19:59:03 GMT -5
Sending so much support to you.
I don't have any personal experience, but I've followed the blogger at The Great Umbrella Heist for years. One of her daughters has SB and she blogs about it. I'm sure she'd also be receptive to any comments or questions via comment or email.
I grew up with a sister who had a severe case of Spina bifida. Growing up it was my normal, so even though I knew our family was different, it was just life to me. My sister is an adult now and lives in assisted housing. She doesn't work, but that is mostly because she would lose her benefits if she made over a certain wage. She really needs her benefits because of all the health complications.
Growing up, besides being in a wheelchair, she had a mostly normal childhood. She played sports just like us. Sledge hockey, baseball, basketball, and track and field were all things she did at one time or another.
We all had a happy childhood. I think a large part of that was that my mom found good community resources that helped not only get my sister involved in things, but also got us involved as a family.
I hope that was helpful. Let me know if you have any questions I can answer.
No advice, just hugs, and if you come to CHOP you will be in excellent hands. I'm local, so if you have any questions about Philly or you want to reach out, PM me.
Ditto on this. I am familiar with CHOP and after my surgery I was seen up to 23; but I am 31 now. I don't know if I could provide anything additional but I am also available for any questions.
I'm normally on MMM, but wanted to pop in and offer big hugs. I don't have experience with SB but one of my 3 month old twins was born with hydrocephalus as a result of a brain tumor that was found after delivery. I am obviously very, very new to hydrocephalus but I know our neurosurgeon has mentioned how much treatments have advanced for both hydro and SB. When I was pregnant several doctors prepared me for a lot of unknowns, but so far she is doing everything her sister does. I hope that you get reassuring information from the amnio and that everything from here on out goes as smoothly as possible. You and your little one will be in my thoughts and prayers.
I have no experience to offer, but I'll be thinking of you and saying a prayer for you and your sweet baby. I sincerely hope that you're able to have the surgery and its successful. ((Hugs))
Post by fivechickens on Mar 18, 2015 20:22:46 GMT -5
I don't have any advice just hugs.
I don't know anyone with spinal bifida but the director of pediatric neurosurgery at Motts Children's Hospital has it. I don't know how severe as I have never seen/met her but a good friend of mine knows her.
It is overwhemling and scary when you get a diagnoises like that about your baby. My daughter has cerebal palsy and I remember how, even though I suspected, it was like being hit with a mack truck when it was confirmed. The medical world has come a long way and it is very encouraging the things children with disabilities can accomplish.
I don't have any personal experience with the disease aside from a college friend that had a very mild form and I never would have known. You'll be in my thoughts and I am sending lots of Ju-ju your way.
Post by missmaddie on Mar 18, 2015 20:55:19 GMT -5
Sending your family and your LO lots of strength and good wishes. I hope you can make some connections with some of the posters and/or their links in this post.
I have no advice but I also wanted to offer big hugs.
Also, I am a girl guide leader and last year one of my Guides with Spina bifida was able to do cross-country skiing with my assistance. It was amazing to watch.
Huge hugs. One of our primary nurses in the NICU had a son with sb. I'm not sure the severity or details, but from her stories he seemed to be living a very happy life. She would tell us how good he was a skiing, how college was going for him, and just leading a normal life overall. I believe he was living on his own or with friends?
I'm also in SLC. Would you be referred to Primary's or Intermountain Medical Center? We were at IMC but both hospitals are absolutely outstanding. If you do end up going to SLC, feel free to contact me. I would love to help in anyway and I know the parental support at both hospitals is really good. (((Hugs)))
I know this is scary and I am so sorry! A mom from my BMB (though she isn't active anymore) has a daughter that has both SB and I think the hydrocephalus. She has a blog called Ernie Bufflo (erniebufflo.com) and she is very sweet and I am sure would be very willing to talk to you. From what I can tell via IG her daughter is absolutely thriving and perfect! Big hugs!
This blog has brought me so much hope. I'll keep reading the other blogs too. Thank you everyone.