@ spina bifida diagnosis

[caramia]

I've been posting on GP but thought I'd get more responses here...

Do you know anyone with spina bifida or know of any good resources for raising a child with it?

PDQ

I'm 21 weeks pregnant with our first, after a mc last summer. Today we found out the baby has spina bifida, the more severe form with the spinal cord outside the body, plus fluid on the brain from the pull of the spinal cord. We're both completely shocked & overwhelmed, so I'm looking for more info on raising a child with this condition.

I had an amino today. If the results indicate no chromosomal abnormalities, I'll hopefully be referred to the Children's Hospital of Philadelphia for the baby to have surgery at about 25 weeks. We live in MT so that's way out of my comfort range. I'd have to go back to deliver the baby too.

If I can't have that surgery, I'll have to deliver in Seattle, Denver, or SLC so the baby can have surgery right away. The hope is to minimize nerve damage and brain damage from the fluid. Until birth, there's no way to know how much damage there is or how disabled the baby will be.

I'll take any hugs and information I can get. Thanks if you read that whole thing. I just don't even know where to go now...

[vanillacourage]

No information but big hugs; sounds like your medical team has you in good hands. 

[appleaday]

*Hugs* I'm sorry. I don't know anyone who has dealt with this personally but from what I gather the surgery while in the womb is quite successful if I'm not mistaken.

[gummybear]

((huge hugs))
I do not have any advice but CHOP is a wonderful hospital. A friend of mine delivered there bc her daughter had a severe heart defect and she said that they were incredible to her. Maybe someone there can put you in touch with some families who have had the operation? Best of luck to you and your baby <3

[shamrockshake]

I have no information, but lots of hugs and prayers

[bigoleworm]

I work with a woman who has severe spina bifida
She is a speech therapist at my school. While she does use a wheelchair, she lives a very fulfilling life. She is married, has two kids, drives, etc.
Her parents thought it was a death sentence when she was born about 40 years ago. We have come so far medically since then.
I want to offer you big hugs.

[Monica Geller]

Oh no!! HUGE HUGS! I'm sure you're reeling. Allow yourself to feel whatever you feel. I'm so sorry.

[lilafowler]

Big hugs. They've made so many advanced with spina bifida-I'm glad you're in good hands.

[Saudade]

I've had a couple patients with spina bifida. Both were more severe cases and I'll spare you the details. Since they were older people, I imagine medical care has increased and improved since then. CHOP is a wonderful place for care. Hugs.

[irene adler]

How scary. My cousin got this exact diagnosis about 2 years ago. She had fetal surgery at Children's hospital in stl at 25 weeks (in early April, I think?)
She delivered a beautiful baby girl in June, and she is thriving and amazing all of her doctors. As far as I know she has not had mobility issues, but has had some elimination/bowel issues.

My cousin lives across the country,so I only know what is going on via family update, FB and her blog. I can pm you the link, and I am certain she would help answer any of the scary questions of you contact her there.

Big hugs, it's scary, but modern medicine is amazing

[sassycat]

I have an adult child with SB, he did not have hydrocephelus* sp ( fluid on brain)

First off breathe. You have all the hugs in the world.

My son was born with his spinal cord in a bubble on the outside of his back, and they had to braid it back into his back at 3 days old. As I said he has no fluid or anything. He is my miracle child, as he does walk and works, but there are other medical things that he has to do daily but he is ok today.

Please please feel free to pm me with some questions, I am not a medical person by any means, but I didn't know until my son was born so it was a great surprise for sure. I had a million questions from how to why me, but in the long run he/she will be a child you love unconditionally.

Again feel free to pm me I will do my best to offer what I can offer you. (((hugs))))

[cereal K]

All I have is big hugs, thoughts, and prayers. But I got a lot of them!

[rosiebear]

Big hugs. The fact that they may be able to do surgery on your baby at 25 weeks is amazing; medical treatment for the condition has come so far.

Your local hospital may be able to hook you up with some support groups. I wish you the best.

[nursewife]

I've seen a few patients with spina bifida. They are people that have gone on to lead very normal, successful lives. One of my prior coworkers has a daughter that was born with it very severely. Her daughter has done so, so well for herself, and it hasn't stopped her from doing most things she has wanted to do. There has been so much progress in treating spina bifida than there was even 25 years ago when she was born. You obviously have a great time of people looking out for you and baby. Trust that they'll do their best job to ensure you are both as well taken care of as possible. ((hugs)) I'm sure this is so scary for you. Surround yourself with family and friends to get you through the rough patches.

[hazel]

Tons of support and hugs for you.

[caramia]

❤️ thanks everyone. I am worried about quality of life, so these stories are reassuring. irene adler I'd love the blog link if you don't mind.

[ghost]

First of all, prayers and hugs for you!
Second, my sister in law has spina bifida .She did have hydrocephalus. She is 36. Works two jobs and lives a very very full life. Shegraduated from college and works in a social work field. She does use a wheelchair. Although, when she was younger, she walked with a walker. She gained too much weight in her teen years and is unable to walk any longer.
She runs several support groups for others.
It is tough to say what you will face at this point. The unknown is scary. I just wanted you to know there is hope! PM if you have any questions. I could also put you in contact with her. I know she would be willing to talk to you!

[Cricket0619]

Many hugs to you.

[meganew]

I don't have any information to help you, but I can offer you hugs and good thoughts. You'll be in great hands at CHOP, they really are the best. <3

[textbookcase]

I don't have any advice, but I wanted to give you big, huge hugs.

I know a little girl who was born with spina bifida. I don't know how severe it was but she leads a very normal life as a 7 year old now!

[jlt19]

Huge hugs coming your way!

[mcc]

Hugs
abcdefu may have some positive words to share

[iamgrace]

No advice, just hugs. I hope everything works out as best it can.

[eav2c]

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!

[foodiemom]

I'm so sorry to hear you are going through this. One of my very close friends went through this and was also seen at CHOP. This was 6 years ago and maybe when they were doing less than they are now as her option was to be placed in a study, but she wasn't guaranteed to be in the group that received treatment. I know her case was also severe, and at the time we felt lucky that CHOP was our closest children's hospital.


CHOP truly is the best of the best and they will spend the time to go over all options and the treatment path. Things progress every year with spina bifida research and treatment.

Thinking of you.

[thatgirl2478]

I don't have any information for you on spina bifida, but I'll give you (hugs). I'm sorry that you didn't get the news you wanted, that's really REALLY hard when you're pregnant. My DD2 was diagnosed with a kidney issue in uetero so I know what a shock it is to get any news other than 'that's a healthy baby'.

I supervised/worked with a guy who had a shunt installed to correct his hydrocephalus, he was the best worker I had!

[tripleshot]

I don't have any advice, but wanted to offer a hug.

[sapphireblue]

I don't know anything about this but I am so sorry. This has to be very scary and overwhelming.

[Deleted]

I'm so sorry you are going through this.
Praying for your family,

I follow a blog of a mom with identical triplets and one has SB. They are about 6 yrs old now. She writes about her daughter's SB occasionally. The Great Umbrella Heist

[winelady]

No advice, just hugs.