Spinal Bifida

My sister was born with it 39 years ago.

She had fairly severe physical handicaps growing up. She spent about a year in a body cast at Shriner's Children's Hospital. One of her legs is shorter than the other. She had a rod put in in her back as a 'tween. We calculated she had 10-11 surgeries over the years? She did a stint at Boston Children's Hospital too. She still walks with crutches and needs a special shoe with a lift.

Today she is also a licensed CPA, and a married woman of almost 17 years with two amazing children. She is my best friend, the woman I trust most in the world - and someone without whom I can't imagine living.

There is hope, but it will be scary going for awhile.

With the red hair (and likely European ancestry) I would test for the MTHFR mutation and make sure this child (mom too) is able to adequately absorb folic acid.

Good luck - lots of love and prayers going out to your niece and her family.

This is something that is able to be diagnosed with a 16 week ultrasound... did they not opt to have one? This is a horrible thing to be 'surprised' about after the birth.

For most families - this is a harsh and expensive disability and most spinal fusions, stents etc are not very successful in the more worse cases.

I wish your neice's family a lot of luck and patience.

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I know one little boy my oldest son's age (5), with a moderate case. No mental/brain development problems, but in a wheelchair or on arm braces (he had to drag his legs-cannot walk). He has had a surgery with more scheduled and is a great kid. He is in the hospital a lot.

My best friend's brother had a bad case and his parents were told he wouldn't live a week (this was almost 50 years ago), but he lived to age 43! He had numerous surgeries and very proactive parents. He lived independently and was married to a woman who also has it. Both had/have speech delay issues. He struggled with depression a lot. Ultimately his death was due to a heart attack.

If the baby lives and is able, tell them to be very proactive, join a support group and get him around other kids like him. Also be prepared for lots of physical and psychological therapy as he grows.

That is a very difficult and scary thing to hear at birth and I am quite shocked that the doctors did not know this! Did she receive prenatal care and any ultrasounds? I worked in a wonderful hospital in Dallas called Texas Scottish Rite Hospital for Children, they provide free, yes, free care to children dealing with this exact issue and others. I used to work in the psychology department and we would often test these children to assess their intellectual functioning, as most will have some impairments. this allowed us to help with school issues as well. the doctors there are absolutely amazing and provide the best care I have ever seen. There are going to be a multitude of issues facing this child and their parents and they will need all the help and support possible. Please look into this hospital---they do all outpatient care, inpatient care, and surgeries for free!!! You just have to be a resident of Texas, I believe. the website is www.tsrhc.org. They can also provide you with a ton of information as well. Folic acid is a key prenatal vitamin that is needed, so education is key if your niece has more children---she will need to watched very carefully as well. good luck and hopefully everything will be okay in time.

Some tips: Be sure that your niece wants the info before giving it. She might be bombarded with info from all around. Don't say, "Let me know if there is anything I can do to help," since it may be hard for her to ask. Just offer something like, "I can come by tomorrow to do some laundry, clean and make dinner or if there is something else you'd prefer..." It's easier if she knows what you are willing to do and when. Ask if you can take the other child to the library, park, etc. Ask her how she is doing and listen. She might need someone to listen to her more than get bombarded with info. Or she might want as much info as you can find. Be sensitive to her needs so you are helpful instead of annoying. Bless you for being involved!

I taught an 11 year old student with spinal bifida, and he was a delight. He had a wonderful sense of humor and was well liked and easy to be with. He was enjoyable and enjoyed school and friends.

In addition, he was very handicapped. He was in a wheel chair and needed alot of help with most physical tasks. He was pulled out of most classes for special education classes. He went to the nurse at lunch time to have his catheter (?) changed?

He was really a wonderful kid from a nice family, but the "handicaps" seemed severe.

Prayers to your family. My son had hydrocephalus in addition to other brain abnormalities so I can relate to getting an absolutely devastating diagnosis. Hugs.

My cousin was born with this. I can't remember how old he is now but he and his wife just have their 1st child (I guess she's about 6 months old now). He is confined to a wheel chair but is extremely smart, holds a college degree, and holds down a full time job. He did have multiple surgeries to place shunts in his brain (had to be done every so often as he grew) and a surgery or two on his legs. Yes - this type of disability is rough but with good doctors and knowledge it is doable. Just be there for your niece and let her know you are there for her when she needs you. And love love love that baby !