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[witherk]

I am new to this board, any board for that matter. We are in process of adopting a little boy that is almost two years old. His spine stopped developing at T6. His legs and lower body are very, very tiny and will not grow much more plus the spinal chord is not connected, his lumbar and sacral genesis is not there. I may be confusing some of this but I would appreciate any kind of information about how to best care for him, what to expect, what helped you as a child, or what is most important to remember, tips to navigating medical maze, any alternative things to do to help him to be healthy, andy advice on wheelchairs for a very tiny person. He uses something like a Frisbee disc and can get around on the floor as his upper body is fine. He will be two in December. We know absolutely nothing about any of this. He goes to a spina bifida clinic. Would also like to know if there are any groups that we could join that would have a child with this disability. Would like to hear from others with this disability also. What is average life expectency for this type of thing. I am prattling on and on. Thanks, Katherine
zps- He is diagnosed with severe caudal regression syndrome, absent lumbar and sacral genesis.

[Joed]

Hi witherk....

I was born with spina-bifida and severe scoliosis.

Unfortunately, I can't relate too many of the details of what went on with me, medically, as a child, because back then, children were not made privy to much.

I had all of my surgical procedures at Shriner's Hospitals, and the people there are wonderful. I have many, many good memories from my stays there, and all of my surgeries were beneficial to me. And I was able to keep up with my schooling because they provide education for their patients.

One thing I'd want to pass along to you: Keep all the medical records that the facility will let you bring home. The spinal center I now go to insists on the patients taking their films home, as too often these things get lost over time, and my Dr. feels that the patients do a better job of keeping track of them.

I'm now 47 y/o, my mother has since passed away, and Shriner's expunges their records after a certain amount of time. Now I have nothing to show my neuro what exactly was done to me, surgically or therapeutically, as a child, which forces a lot of guessing....and I'm uncomfortable with guessing when it has to do with my cord.

Another thing I've learned since, that wasn't available to me, is that children with spina-bifida, particularly, should have some kind of counsel during their pubescent years, as there could be some unique issues regarding sexuality.

My parents never treated me any different from my other siblings, and for that I'm grateful. I believe it's the reason, although I knew I had a spinal problem, that my 'body image' was that of an able-bodied person.

It sounds like your new son's condition is more severe than mine, so I'm hesitant to speak to what you can expect. There are several good organizations where you can learn more. One of them is the Spina-bifida Association. Here is their link:

SBA

Another informative site is Brain Talk. They have a forum for spina-bifida, as well as cord discorders, near the end of the page:

Brain Talk

I hope some of this helps. If you have any more questions, and I can answer them, I'd be more than happy to try to help.

And congratulations on your new addition to the family!! Adoption is a wonderful life experience (we adopted my son), and even more so when the child has special needs, because a strong, supportive and loving family will make all the difference for him.