Spina Bifida


How was your child's spina bifida diagnosed? Submit Your Comment

Comment from: Shay , 19-24 Female (Patient) Published: September 03

I’m 20 weeks pregnant. I just found out today at my doctor appointment, through ultrasound, that my child has spina bifida. I’m really worried.

Comment from: Fighting4mylife, 19-24 Female (Patient) Published: May 12

I am 19 years old. A week after my 18th birthday I was diagnosed with chronic kidney failure stage 3 and a tethered spine. After battling chronic urinary tract infections and constipation my whole life, my kidneys had begun to be overworked and I learned my bladder was neurogenic and essentially ‘dead’. To protect my kidneys, I had surgery to install a super pubic tube. Within 6 months I now have an Ileostomy bag. I have no specific diagnosis or why my organs are failing me. My doctors refuse to test me for spina bifida.

Comment from: areidi, 25-34 Female (Patient) Published: August 13

When I was 20 weeks pregnant, doctors told me my baby had spina bifida. They did several tests and ultrasounds, and they talked to me and my husband about considering abortion. We said no, we told them we were going to have our baby. Our baby came out healthy, no problems at all.

Comment from: kimberley, 0-2 Female (Caregiver) Published: April 21

My daughter was born in Ontario Canada in 1975.she could not move from the neck down. She has a hole in the middle of her back and a large head with a shunt in it always blocking, club feet. I was 15 when she was born and I can remember the little pills the doctor gave me to take while pregnant. I didn’t take them too lazy and just a kid. I told no one I was pregnant until I was 7 months along, so I didn’t see a doctor the first 4 months. She died at 6 months old in Ottawa Ontario Canada. I hemorrhaged after the birth and could never have any more children. It was a sad life for all of us at that time. I did bring her home for 6 months before she died.

Comment from: Me, 55-64 Female (Patient) Published: May 03

I learned of spina bifida as an adult. So least I was able to have children. But the pain and headaches are horrific; and not being able to hold my bowels. As a women it is terrible.

Comment from: Momof2, 3-6 Male (Caregiver) Published: June 05

We found out our son had spina bifida by ultrasound one week before he was born. We were given worst case scenarios. He was going to be severely disabled; have low cognitive function; he might not even live through the birth. My son was born at 37 weeks by C-section and was immediately transferred to the nearby Children's Hospital where he underwent surgery to repair his myelomeningocele at one day old. We made it to 18 months before he needed the shunt placement surgery. Let me tell you my boy is a holy terror now! He walks with the help of leg braces and gets into everything! I am pretty sure he is smarter than I am. He has and continues to surpass every one of his doctors expectations. There have been trials and tribulations with the spina bifida. He has had four surgeries and he is only three years old, but he bounces back every time. Don't let the doctors tell you what your child won't be able to do! wait for your child to show you what they can do!

Comment from: Kjax39, 19-24 Male (Caregiver) Published: February 04

My son is 20 years old and has been having pain and loss of sensation in his legs. He had an MRI which has shown 2 prolapsed discs, degenerative disc disease and spina bifida.

Comment from: 25-34 Male (Patient) Published: November 12

I was in a car accident on the way to work one day. Several weeks later while in the ER for back pain the doctor pointed out to me in an x-ray that I had spina bifida. I wasn't aware of this till I was 21 years old. I did not appear to and has not seemed to have an impact on my life.

Published: May 11

I was diagnosed when I was 19. As a child, I suffered a lot of pain which was ignored by my parents. I look at photos of me as a toddler and I resemble a bent banana. I have a dip in my lower back.

Comment from: mother of 3, 0-2 (Caregiver) Published: March 12

I am 28 years old and I am pregnant with my 3rd child and I was told my baby has spina bifida and I was devastated but I am thinking positive I think everything will work out for the best. My two other children are fine. We have no family trace of it at all so this is a very random thing that is happening.

Comment from: MISDIAGNOSED, 25-34 Female (Patient) Published: February 21

At the age of 25, I found out that I have spina bifida. I found out after a motor vehicle incident. I was never told by my mother that I had this disease and I’m having worse problems the older I get!

Comment from: nitedreamer, 13-18 Female (Caregiver) Published: October 04

My son is 18 and just joined the Army. They told him he was going home. His leg is numb and his back hurts badly. MRI was done he was told he had spina bifida.

Comment from: cbagwe, 13-18 Male (Caregiver) Published: June 28

My son is 16 and his spina bfida was found when he was age four because of a BUN X-ray.

Comment from: vicky, 0-2 Female Published: April 07

My daughter-in-law has just been told her unborn baby girl has spina bifida. She is 20 weeks and is going to go full-term although she has been advised the baby will be severely disabled. We are devastated and do not know who to talk to.

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