Hey there. I'm glad you posted. Personally I say please don't terminate the pregnancy because quality of life anymore for S.B. is full. There are many different types of it as well, the higher up the spine is exposed the less of the chance for walking.... but that isn't really an issue because that it what a wheelchair is for :) The baby may also have hydrocephalus, which is spinal fluid on the brain. They place a shunt in to drain the fluid. It is very challenging to watch all the surgeries and appointments. My parents treated me the same as the other kids and taught me to do things for myself, like dressing and self care. Just treat this baby as you would any other one and teach them to be themselves and independent. Good luck. I'll answer any other questions if you want.... I'm not sure what else to add.

My daughter was born 32 almost 33 yrs ago. there was little hope then. Now there is so much more they are able to do for chidlren born with SB. My daughter drives a car and lives on her own. She just graduated from a local vo-tech with HONORS. Pretty good for someone who was not suppsoe to live to be a year old. Anyway I wrote a book about my expereince with my daughter. The Chief of staff at the hospital recommedns my book to everyone especially to thsoe who are expecting a child with SB. I talked with a mother who was told at 22 weeks gestation that her baby had SB. The doctor bought my book to give her. The mother said it made a big difference in her life and a decision to carry her baby full term. That was several years ago. Her litle girl is doing great and she and her husband are so grateful they decided to carry their child full term. TI is difficult to raise a child with SB but worth every smile and every achievement. I became the person I am today due to expereincing a lot of miracles and answered prayers. The name of my book is Missed Blessings. I will be praying. She will make it because she has a friend like you to support her. She will need lots of support

Check out my journal on my son Drake - I'd be glad to chat about our experience and our decision making process when we found out the diagnosis also at 19 weeks. I can absolutly empathisize with what your friend is going through and if I can help please don't hesitate to ask me anything. Kati

Please email me I have a son that was born with Spina Bifida. Please encourage the friend not to terminate the pregrancy!God has choose ur friend for a reason to b the child's mom! Thanks for a the friend that she needs!

Hello the quality of life is good for people with Spina Bifida and I wanted to let you know not always when the SB is high does it mean you will not walk because ine is between my shoulders and I didn't have hydrocephalus. I am very lucky I can walk but i'm also very happy. I had my first operation at 24 hrs old they did't wait. What ever the doctors did that day now I'm able to walk, but I didn't walk until I was almost 2 1/2 I think.I finished high School and went to College.I did have soe problems with Spelling when going to school but my mom was a teacher and worked with me. So I just wanted to let your friend know that her baby can have a good life. What I can't understand why her doctor didn't tell her to take Folic Acid everyday after her first baby had SB. She and all women should be taking it everyday of there lifes and SB would be stoped alot more,but doctors do not tell women to take it. I will never understand why they don't.

I would just like to reiterate the idea that your friend should NOT by any means terminate her pregnancy. I am a 31 yr old man with Spina Bifida Cystica, which is the most severe form. I do not use a wheelchair, and only in the past 2 months starting using a cane for stability. Up until then, I walked unaided. I have had a blessed life, and have been able to do basically everything anyone else can. I've snow-skied in about 12 different states in the US, hiked Mt Washington in NH, ride in charity bike rides for Cancer every year, which is either a 50 or 100 mile ride. I also graduated HS with my regular class, and went on to graduate a 4yr college w/a degree in Mass Communications. I now hold a good job at a major car dealer group in the northeast. Just a vote of confidence, and hopefully a ray of hope! It's not an easy life, but it's rewarding!

I would have to agree with everyone else and say DO NOT TERMINATE. I have an 8 month old son with Spina Bifida and he is a dynamic personable baby. Sure there are hard days- even weeks but I see God's hands working in Micah everyday.

I also agree with everyone else who posted prior, but your friend needs to make up her mind for herself based on her own situation and her daughters. Here's the path we took. When my daughter was diagnosed at 19 weeks, my husband and I were devastated. We had also had two prior miscarriages and a 1 1/2 year old healthy son at the time. We took all the information we were given as to the level and size of her lesion + test results and sonograms and took it to the two foremost pediatric neurosurgeons on the East coast. We were trying to determine the potential severity of her condition in order to make the right decision for her. Both doctors, luckily for us, said that her prognosis for a quality life was very good. They both thought that she would walk and do everything relatively normally, except she would most likely have issues with bladder and bowel control. Our daughter is now 2 1/2 and doing extremely well, as predicted. She walks with a walker at this point, but we hope that she will walk on her own soon. She attends regular preschool and is very happy. I would recommend that your friend contact Children's Hospital of Philadelphia (PA), because they, as far as I know, are one of only two hospitals doing clinical work on in utero surgery to repair the lesion before the child is born. They are amazingly accommodating and everyone there is wonderful. It can't hurt to contact them to see if they can do a full work up on your friend. They will do a fetal MRI and whole array of tests, but it might give your friend the peace of mind to be able to make the right decision for herself and her daughter. As for your friend, please tell her to hang in there b/c we've all been there in one way or another and it's the most difficult thing she may ever have to do, but she will get through it. You're a wonderful friend to reach out to us on her behalf. Best of luck to you all!

I'm so happy you posted, first hug your friend! Tell her not to terminate the pregnancy, people with Spina Bifida live full happy lives. I'm a college graduate and I work in my dream job as a volunteer coordinator for a nonprofit that helps people with developmental disabilities. First go on line and look for The Arc in your area - they can really help. They have allot of good references to help you both. Second get books on children with disabilities - focus on the books that have positive reinforcement for you and your friend. Then try and get your friend to join the group or a group. They really help.

I have Myeleomengecele (Sp?), hydrocephilus, and a man made bladder/bowel. I graduated from community college with a cert. in Accounting and a Gen. Bus. Degree. I work for The Arc in my area and I love my job, they totally accomodate for my health issues and my wheelchair. I walked up until I was 33 when I developed Fibromyalgia. So now I'm in a wheelchair but I live a full life. I was in a relationship for 15 years until his disability and mine got to difficult for him to deal with so he left me. I have a sister with Occulta/MS but she does well. My only problems I have really have been bladder/bowel and not being able to have kids but many with Spina Bifida can have kids so tell your friend to hang in there! Go talk to The Arc in your area and find The Spina Bifida Organization in your area. Also look up The Opportunity Councel they can help allot.

Keep your spirits up both you mom's. You have a loving child to enjoy; don't let a disability get in the way of enjoying that life that has been given to you to love and care for. You can do anything you put your mind to so fight to be happy and to make your children happy. You will be glad you did!