Spinal bifida

Amanda - posted on 08/16/2010

I have a 6 month old who we never found out had Spina Bifida until she was born. She was ''lucky'' in a sense that her Spina Bifida doesn't restrict her as much as some. There is a wonderful website that I use, I don't know if you have heard of it but it's : spinabifidaconnection.com This website is a support group for parents of Children with SB and for adults and teens who have it. They will answer ANY question you have! I find that some people here are more helpful then the drs. Just look at it and see if it works for you.
Good luck! and well wishes for you and your family.

Lisa - posted on 08/15/2010

I have a daughter who is 10.. she has SB L-5... We found out that she had SB during our 6th month of pregnacy.. It was hard to take the news. and yes us too were told we should abort and that our child would be a vegetable.. But My husband and I not one sec thought about Abortion. that was not an alternative.. My daughter had surgeries.. PT/ OT.. ect.. She went through First Steps Program.. when it was time to see the Orthopedic.. ( 3 yrs old )he told me she would never ever walk.. and be confined to a wheelchair., & yes that too was sad news.. but when i told the PT.. what he said.. SHe said No Way !! SHe will not be confined to wheelchair. get second opinion.. So we did.. And the other ORTHOPEDIC.. put my daughter into a walker.. then we went to Bi lateral Crutches. and so thats what she is in today.. with only wheelchair for long distances.. ( but she can wobble around without anything.. I keep praying that one day.. God Will Heal her .. only in His time.. and if not. thats okay.. because he has plans for her.. )

So how are things with you Lanua South.. ? Please keep us posted.. Blessings to You and Your Family !

Trish - posted on 08/13/2010

Our Josh was born with spinal bifida 4 years ago we were also hit with the news at 30 weeks. at the time we were told the worst, he would not be able to walk or talk never would be able to join the family we should think about giving him up at birth or abort. I couldnt dream of ever doing either. Josh was born and had his operation at 3 weeks of age.still all the Drs said all negative. We have never given up on him and pray alot. he has had 4 operations at the age of 4. the Drs were wrong in our case, Josh was given a 5 per chance to walk, well he walks and mostly runs, he talks very well and on most days never stops talking. And 3 mos. ago we were told he could never be potty trained and think about sending him to a special school, we have had to cath him 4 times a day because he was not able to empty his badder on his own. Well he is proving them wrong again, he on his own decided to wear big boy pants like his brothers so far he has had a few times he didnt get to the potty in time, but he is doing it, It hasnt been easy at all some days you just cray to let out the worry and fustration and fear of what may be down the road for him but giving up is not an oppion. God sent us this little angel for some reason, I have been told that God only sends these angels to parents that he knows can give them love. Follow your heart, never give up. Its one day at a time one foot in front of the other. We have nerver told Josh he couldnt do anything, in fact he calls his SB his bunny tail because its at the base of his spine. We have always treated him normal he doesnt know he has SB and he is limited. We have had great suport from family and friends. We couldnt have made it some days with out them. Trust in God and your self, it will all come to you and you will make it through even the worst of days because you have to be strong. God bless you,

Yheyhe - posted on 08/08/2010

Hi Gina, I also have a child with SB he is now 4 years and 8 months and is attending regular school. I am just wondering if your kid can walk and stand alone? If yes, at what year? mine cannot walk or standa alone but he have braces. Thanks, yhe

Gina - posted on 01/28/2010

Hi,

Start by taking a deep breath and relaxing! She will be a beautiful baby just like your other two, though with her you will appreciate every little milestone. She will show you how special life really is, and I should know my third child has Spina Bifida and he is ten now. Its like planning for a trip to Cosmel....you plan and pack, then get on the plane then fall asleep....when you awake you've landed in the Swiss Alps....Its beautiful...though not what you planned or prepaired for...but still beautifut all the same if not more so.



My son, Andrew, is now ten...the first few years were bumpy...but he is in a regular fourth grade class making A"s ans B's, has tons of friends even a girlfriend(AGH!). He has a way of touching everyone he meets in a positive way, not because of his SB but despite it. He has never been babied or coddled or told he couldnt due something due to his SB.His SB is not a defect but just another physical characteristic his like hair color. He is a normal kid with normal a brother,sister, and family.



There aresome wonderful support groups and info sites. ( Lookup SBAA,Spina bifida Assoc.of America, & Yahoo groups SB parents for starters).



Your daughter will be a normal baby just like the your other two. She will need love, affection, and to be treated just like any other baby.

Take a deep breath....you can do this.....its going to be OK. Gina

Christy - posted on 01/24/2010

Our 1st daughter was diaganosed with Spina Bifida when I was 20 weeks pregnant with her! She is now almost 4 yrs old and growing like a weed. It was very freightening for us to hear that she had this as well as hydrocephalus (spinal fluid build up in the brain), my doctor sent us for a level 2 ultrasound and that confirmed our worst fear. They connected us with the Neorusurgeon at Childrens hospital to talk about what we could expect once the baby was born. She underwent a double surgery at just 2 days old to close her spine and place a shunt to drain the spinal fluid from her brain. We go to Childrens now every 6 months to see a group of drs a speciality clinic that is just for children with her type of Spina bifida (myelomeningocele or myelo for short). Did they tell you at what level her defect is and what type it is? my daughter's is in the L3 region, which affects her lower extremidies. there is a lot of other diagnosis that go along with this condition. I hope i didn't go overboard with the info, but just remember that God only gives you what He knows you can handle! It may be overwhelming and challenging but you will get through it! Christy