Spina Bifida

Hi A.! My name is M. and I am also 25. I have 2 children, 6 and 1. My 6 year old was born blind when I was just 19. I was devasted at first but I just looked at her and thought I am the only one she depends on now, I have to step up to the plate. I still break down and cry, I still get sad when I am sitting around analyzing all the things she Can't. I have learned through the years to celebrate what she can do instead of what she can't because isn't it awesome that we were even able to bear children? I always try to think of all the women who wish they could have children, "normal" or not! Please email me anytime you want.

A.
I know that this is scary not knowing and having no answers, but you have to stay positive!! My advice to you and your husband is to ask lots of questions and understand the disease. Also do some research after you find out if and what kind of SB he has. This will help you understand what is to come in the future.
My thoughts are with you and your family!!!

I don't have any first hand experience with your situation, but I just wanted to offer a cyber-hug!! I'm sure it is excruciating to wait for more information/answers, but maybe they will have better news. Modern medicine can do wonders!! Please take it one small step at a time, and find a good support group of families with the same situation. You will make it through, and be stronger because of it!! Keep us posted, if you can........I'll be praying for you all!
C. G.

I have a child with SB. I know exactly how you are feeling right now and I want to send you a {{{hug}}} It's so rough after finding out but then you start to deal with it and get yourself organized. I live in Mishawaka but we went to Indy to have him so he could be cared for at Riley's Children Hospital...it was a personal preference and one that my OB suggested. I know you have a lot of questions and emotions right now so I'm going to give you my email address and PLEASE feel free to email me. We can chat via email, yahoo IM or if you are near by I would be happy to meet with you and even have you meet Matthew, my SB baby :) I won't tell you it's easy and a bed of roses but Matthew is awesome! Very intelligent and such a smart alec that he makes us laugh everyday. All the wonderful things about him make it easier (not all the time) to care for his extra needs. ____@____.com

K.

A.,

I do not have any experience with this situation but I just wanted to tell you that you and your family are in our prayers.

K.

I can't imagine what emotions you are going through. I also do not have personal experience with receiving such news but I am an occupational therapist and have worked with children with spina bifida. ONe thing I am always amazed about is the determination many of the children with SB have. I have seen children find ways to do things they want to do that are just amazing. I have also seen babies in the NICU that we thought would never move their legs start to move within hours of birth. I do have a friend who has a little girl with SB. If you would like to please email me and I will give you her email address. I will be praying for you and your husband and of course your precious baby.

Annie,
I do not have any personal experience with spinal bifida, but I fully understand the emotions you are experienceing right now. Our daughter and third child was diagnosed with anencephaly (another and the worst form of a neuro tube defect) and we lost her at about five months of pregnancy. That was this past February. After getting the diagnosis in South Bend, we went to Indy. They treated us so well there. I hope with your specialist, you are treated as well. As you have seen from other responses, many people have shared positive experiences with spinal bifida. Medical technology has come a long way with this neuro tube defect. I wish you the best. You will still be able to have and experince the joy of your baby boy. I know it may be early to tell you about this, but if you would be interested in participating in a study through Duke Universtiy on neuro tube defects, I would be happy to give you contact information. We decided to participate, so that maybe years down the road our children and other people do not have to go through what we experienced. This has been some comfort in all that has happened. It is your choice though. I will be thinking about you and I wish you the best. Feel free to e-mail me at any time.

Take care,
S.

i don't have any experience with that condition. but at 24 weeks, you've still got a lot of time left. a lot can happen between now and when you deliver...his spine could heal by then. just pray. i will keep you, your family and your baby in my prayers also. if his/her spine does not heal though, take comfort in knowing that in these modern times, he/she has a lot better chance at a normal or nearly normal life than in years prior. God Bless...M.

I know a little about you are going through. My first born, which is now 17 years old was born with alot of medical and mental problems. I was blessed with alot of prayers and faith. I was told he would not make it to the age of 5 Years old. I have 2 girls also, which one of them, the baby girl, has a lot of problems also. She is 14 years old and weighs in at 69 pounds. I was told once by a great man that the Lord gives special people special babies. He knows they will be loved and taken care of. My prayers are with you and your husband. G. H

Hi A.,

My older sister who was the first born has Spina Bifida. She is now 44yrs old. Things have come a long way since her birth in the 60's. My sister is a full functioning person. She does have her medical needs that my mom choose to learn and do herself. She works, drives a car and enjoys going to sporting events.

The biggest things is that the sack that is on the bottom of the spine doesn't repurture during birth. If that is prevented your son will most likely not have an paralysis to his legs. I am not a doctor and I encourage you to listen to the specialist. One of my high school trainers was classified as Spina Bifida but,he could walk and everything.

I know that it is a scary time with lots of questions. I have six children and that was one of things we looked at closely for in ultrasounds.

I wish you the best of luck with everything and encourge you to remember that your son will still be a bundle of joy.

Feel free to contact me at any point if you want to learn more of what I know from growing up with a sister who has spina Bifida.

A.