question about SB and adoption

[terrellgirl]

Hi again everyone,

We're a family who just joined because we're thinking of adopting a little girl we met last month in China who has SB and is in a wheelchair.

We are blessed to be in contact with a therapist who is familiar with the child's case and can give us details about her condition we would not normally be able to have before viewing her adoption file. Please read what the therapist says below. I would appreciate comments from you all as to what clues might be contained in the information about what type of SB she has. (I don't know her official diagnosis.)
Is there anything to be gleaned here? I know very very little about SB.
Would this child potentially walk with braces?
What's the latest in SB treatment that might help her...I have no idea.
What kind if kidney problems follow incontinence?

Here's what the therapist says:
According to my knowledge, TM had a well healed surgical scar in her lower back when she was admitted to the orphanage. We know nothing prior to her admission. We figure she must had a surgical repair for her lumbar spine spina bifida way before she was transferred to us. She has no IV shunt which rules out hydocephalus. I did not notice any club feet either, although she loses her sensation and movement in her right foot. At times, she may have an accident in school and wets her pants when she cannot make it to the toilet. I don't know how well she can control her bladder. Whether she has kidney problem at the moment I don't know. If she is proved to be incontinent one day, then she will be likely to have kidney problem. One thing I have to admit is, indeed TM is a lovely girl!
Thanks everyone!

[LisaJoy]

The incontinence is a result of neurogenic bladder -- neurological impairment of the nerves that control the bladder. Almost everyone with sb has this problem, but it manifests in different ways depending on which specific nerves are involved. There are three main things that can be involved -- the sphincter (which controls elimination), the walls of the bladder, and the valves (flaps?) between the ureters and the bladder that prevents urine from backing up into the kidneys. (The ureter is the pathway between the kidney and bladder). Depending on which nerves are involved, any one or any combination might be affected, but even then, the effects can vary. For example, some people have a flaccid bladder (very weak, limp bladder) that continually leaks urine but is never really empty. Others have a very stiff bladder that stores urine at high pressure and have difficulty expelling urine (but tend to leak or expel involuntarily if the bladder is too full). Both are prone to chronic urinary tract infections. If a person has frequent UTIs and the bladder pressure is high enough to force urine back up the ureters (or the valves into the ureter are impaired), then the person will have chronic kidney infections. Kidneys that repeatedly get infected can lose function over time. There are a number of tests that can determine whether any or all of these are taking place, but if she does not have a history of repeated infections, she likely does not have kidney damage now (but could develop it if she has a problem that is not being treated).

Most people are able to manage these issues through a combination of self-catheterization (very easy, nothing to be afraid of -- she's old enough to do it herself) and medication (Detrol or Ditropan are most common). Some people require surgical intervention. Many people, especially young children with a history of reflux (urine backing up into ureters) take antibiotics regularly as a preventive measure.

Having neurogenic bladder doesn't automatically mean kidney disease -- I've had neurogenic bladder my whole life (I'm 45), didn't start cathing & taking meds until about 8 years ago, and my kidneys are completely normal.

As far as whether there are things which could be done to help her walk, there's really no way to know until she is evaluated. But my impression from the wheelchair users on this forum is that being a wheelchair user is just not that bad an outcome -- many people choose it over walking with crutches and braces because it makes them more mobile. There are several threads somewhere in the forum where this is discussed; sorry I can't remember where; maybe someone else will find it and post it.

Hope this helps -- someone correct me if I've made any errors!

[dahliafaolan]

Lisa's right. Using a wheelchair can be much easier in some cases. I walked when I was young, using a set of braces that reached from my chest to my toes in combination with either crutches or a walker. It was effective. I could walk, but I was very slow and my balance was piss poor at best. (I killed my two front teeth in a fall on those braces.) I much prefer my wheelchair. I have more mobility in the long run. I know it sounds weird or silly, but I actually have more freedom of movement in my chair. That and it can leave one hand open if I push my chair right. I found that I was definitely more independent in my wheelchair.

[Dodger67]

Same here!
I gave up on walking when the bracing reached from tits to toes. (~13yo)
A wheelchair just made more sense.

[terrellgirl]

I really appreciate all of your replies about this! You're helping me understand what life is like with SB. I have never thought of having a child with SB. If one were born to us, we'd give him the best of everything available for him. Now that we're faced with choosing to have a child with SB I know what we've really got to decide is independant of SB, is this girl our daughter? We'll work with her health and wellness just fine if she's meant for us.
Thanks so much!
Kristen

[abbysdad]

:goodpost:

LOVE that post!! What a (welcome) contrast to all the depressing stuff I've come across about kids with SB being terminated. "what we've really got to decide is independant of SB". Wonderful :)

[susieatmg]

We are in process now of adopting a little girl born with SB who is also in China! We have gotten most of the paperwork collected now and most of the way through the homestudy. We like you have alot of unknowns but when it came right down to it we felt a tug on our heart for her to be with us, regardless of the unknowns. We felt that tug before we knew what SB could involve and still felt it after we researched things. I am also on a yahoo group for people adopting special needs kids from China, you might want to check that out too, lots of info on the adoption process etc. One thing you can do is have her file reviewed by an MD. There is a doctor in Ann Arbor who specializes in international adoptions and has adopted several children from China herself. Sue

[jveprek]

My daughter Madi has SB and is 8 months old. A link to her blog is in my signature if you want to read it. I think what you are doing is awesome!! Good luck!