Spina Bifida Support Group

What would you like to know. I am not realy sure how to reply to this but i would like to help I know when i was born my parents had a lot of support from family and friend and there church and church members. Do you have any questions for me? i would be happy to answer any questions you have. having someone with a birth defect in the family is very hard in the family it will be new but it will bring your family closer. I would love to help and answer any questions you have. I will be praying for you and your family and your grandson.

ashley

ashley

When my son Joshua was born a year ago we knew before he was born. He has had 4 surgery's. We went to Yale New Haven Hospital in New Haven Ct to have his surgery. He was also born there. They did his first surgery to repair his back the day after he was born and then they put the tube in his head the day after that. I had alot of support from my family. They helped me alot. I couldn't have gotten through it without them.

Check to see if there is a Spina Bifida Association in your area, these would be parents that have children and they are a great support and a warehouse of information not to mention support. Megan had a rare type of Spina bifida and her spinal cord was actually a knot about the size of a grapefruit on her back. They closed the lesion 3 days after birth and waited for her to pronounce for a shunt , she did 2 day after they closed her back. Talk to the doctors ask lots of questions, sometimes if you write them down before appts or meetings and then take a tape recorder and tape the visits so when you get home you can reveiw the information. Go to the library, and check to see if you have a multidisciplinary clinic in your area. Usually children born with spina bifida have multiple medical problems, neuro, ortho, urology, and a clinic houses them all in the same building so you don't have to run around all over town. Your about to began the journey of your life and these children are so very amazing and wonderful. My thoughts are with

I am very new to this, my son is due in August and we are recieving what I concider the best treatment from the best doctors ( Noel Tulipan, Neonatoligist) at Vanderbilt University in Nashville,TN. I know you posted this a long time ago but hopefully this can help.

The best thing that you can do is pray. I have a 8yr old daughter with spina bifida. The doctors will probably scare you to death, I'm not gonna lie. But, when you see that baby and hold him the 1st time it will all go away. Listen to your heart. Your heart will tell you when something isn't right. EVERYTIME!! The only thing that you can do is take it one day at a time. The doctors told me Lucy would be no more than a vegetable. She talks, feeds herself, sits up by herself alot of things they said she wouldn't. Believe in God and pray and everything will be ok. Your in my prayers

i have hac spina bifida ever since i was born. i have lived for 22 years. it is not a difficult thing to live with until you deal with the pain of your scoliosis. anyway about the surgeries they are tough and difficult. but with good doctors you will be fine. and i have found that there are good doctors at childrens hospital of LA and Childrens Hospital of Orange County. if you have any other questions. i will be glad to try and help answer them.

I reaally don't have any advice because each family must deal with this the best they can. I will (hopefully) give you some hope with this next bit of information. I am 37 years old so I have been dealing with this for a long time and thing have sure changed a lot in the last few years. Life has always been a challenge for me but it has been great too. I have a wonderful and very supportive family. I guess that is the best advice I can offer. For you and your family to be there for him always. Another piece of advice enjoy the experience of being a grandparent. I hear it is wonderful no matter what.

As others here have said, each experience is unique and you just have to stick together as a family the most important thing is love and support. Try to get in touch with organizations in your area. I am an adult who has lived with spina bifida for 31 years. I'm not going to say it's been easy, but I have been very fortunate that all of my sugeries were done at a very young age and the doctor's told my parents that I would never walk and I AM! I walk with crutches when I am away from home and I am able to get around my house and other short distances without them. I have also suprised the doctors by the fact that I have never had any revisions on my shunt in 30 years! or had any other major problems that the doctor's expected I would face. Anyways, I hope this little tidbit gives you encouragement and I hope everything is well with your grandson

i dont really have any advice.... but i do have a comment and a serious question

did you know with spina bifida there is the possiblity to have sezuires

DID I SPELL THAT RIGHT :(


any way i am 15 and have spina bifida...... i have seen some one have sezuires but i never had one in my life .. im greateful for that
i am hoping to never have a sezuire... but if this does happen......I WANNA KNOW WHAT TO EXPECT