Thinking of adoption SB child, need more info

[susieatmg]

Hi, we have been shown a file of a little two year old girl in another country who is said to have SB. She had a lesion on her back that from the pictures I would say was about at waist level, hard to say. They didn't do surgery to repair it untill she was seven or eight months old. She is said to stand and walk with a limp, one side weaker and said to have club feet which the doctor that reviewed the file said that is from the SB, neurological development not traditionally what you would think of a club feet. She is said to have some bowel and bladder control. She sings and talks and watches cartoons. And is completely adorable and my heart says to run and get her. I am worried that what she needs may be more that what I can manage with three kids already to take care of at home and we have a pretty busy life. I came up with some questions if anyone is willing to give their opinion I would appreciate it.

1) What would make it necessary to use a catheter, frequent uti's?
2) If they start to get a tethered cord is it pretty obvious so you can stop damage?
3) Catheters freak me out, is it true it wouldn't hurt her because I had one and that will be the last one I ever have while awake, now if I have a surgery I make them do it while I am asleep because it hurt alot.
4) Is there any way to avoid having to use catheter?
5) Can you get a child tested for the possible latex allergy and are they safe if they don't have one, or can it still develop later? Why latex, I don't get the connection.
I hope that these questions aren't offensive or dumb. I realize alot of you didn't have a choice in your child or yourself having SB so I hope it doesn't offend people I am trying to decide if I can handle a child with this. God Bless. Sue

[LisaJoy]

Hi, welcome to the forum! Do you know whether she had an open or a closed lesion?

Catheterization has several functions -- the most important is that it completely empties the bladder for people who cannot do so on their own. This helps to reduce the risk of reflux to the kidneys and attendant kidney damage and helps reduce the risk of UTIs. For a person whose bladder leaks, regular catheterization can help them stay dry.

Clean intermittent catheterization is truly no big deal. The kind of catheterization you have when you have surgery is different. Many people who self-cath don't feel it at all; most others get used to it. For people who have major problems with it, there are procedures which allow you to cath through your belly button.

Incontinence issues are among the things most troublesome for people with sb. However, that being said, they are manageable. The vast majority of people with sb can achieve social continence by various means (meaning they can manage their bladder/bowels well enough to function in society, even though they don't work in the normal way). Fears about incontinence really shouldn't be a deciding factor.

Here is a good link about tethered cord in children: http://neurosurgery4kids.net/tetheredspinalcord.htm

They don't know for sure why kids with sb have latex allergies. One theory is that latex allergies develop from frequent early exposure to latex because of hospitalizations and surgeries. But there's also evidence that the exposure theory doesn't fully explain the prevalence. People with closed-type lesions (lipomyelomeningocele, occult sb) tend to be less likely to develop latex allergy than people whose lesions were open at birth (myelomeningocele).

I'm sure others can add to this -- hopefully some of the moms will chime in with their thoughts on parenting children with sb.

I'm Lisa -- 44, lipomyelomeningocele, etc., college history professor

[susieatmg]

I believe it was a closed lesion. I am not sure if she will need to have much done for bowel and bladder control as she is going on her own right now, not sure if it is a schedule. They said she does have little accidents of both pee and poop but she is just barely two so can't really tell anything from that. Thanks for the reply and the welcome.

[Summer25]

Hi, we have been shown a file of a little two year old girl in another country who is said to have SB. She had a lesion on her back that from the pictures I would say was about at waist level, hard to say. They didn't do surgery to repair it untill she was seven or eight months old. She is said to stand and walk with a limp, one side weaker and said to have club feet which the doctor that reviewed the file said that is from the SB, neurological development not traditionally what you would think of a club feet. She is said to have some bowel and bladder control. She sings and talks and watches cartoons. And is completely adorable and my heart says to run and get her. I am worried that what she needs may be more that what I can manage with three kids already to take care of at home and we have a pretty busy life. I came up with some questions if anyone is willing to give their opinion I would appreciate it.

1) What would make it necessary to use a catheter, frequent uti's?
2) If they start to get a tethered cord is it pretty obvious so you can stop damage?
3) Catheters freak me out, is it true it wouldn't hurt her because I had one and that will be the last one I ever have while awake, now if I have a surgery I make them do it while I am asleep because it hurt alot.
4) Is there any way to avoid having to use catheter?
5) Can you get a child tested for the possible latex allergy and are they safe if they don't have one, or can it still develop later? Why latex, I don't get the connection.
I hope that these questions aren't offensive or dumb. I realize alot of you didn't have a choice in your child or yourself having SB so I hope it doesn't offend people I am trying to decide if I can handle a child with this. God Bless. Sue

1. Anything can make it necessary really. If the child isn't empting the bladder all the way. If the child has kidney reflux. If the child has a high pressure bladder.
2. It may or may not be obvious. Could just be bladder issues. Could be pain in the back where the lesion is. The surgery itself also carries the risk of further damage, which I wish I was told when I had it done.
3. I have no feeling from my chest down, so I don't feel it. I also cath through my belly button. However, people that can feel it usually get used to it or it doesn't bother them at all.
4. You just never know what will happen later on.
5. I had a blood test after it was diagnosed. From what I understand it is due to all of the surgeries and cathing that we have to go through that causes the latex allergy. Mine developed probably at the age of 6-7 right after entering elementary school. Mine has also become very severe over the years.

By the way, welcome! My name is Summer and I am 25. I have had close to 50 surgeries. At birth I was a T10 level with no feeling from hips down. I am now a T6 level with no feeling from chest down. I work and go to college at the moment. Do you know if the little girl has hydrocephalus or a shunt?

[susieatmg]

No she doesn't. I haven't been able to figure out if that can develop later and need a shunt or if that is something that happens at birth. Sounds like you are a busy person! Thanks for the reply and info.

[Dodger67]

No she doesn't. I haven't been able to figure out if that can develop later and need a shunt or if that is something that happens at birth.

Hi Sue
Welcome! :happy065:
Hydrocephalus is present before birth - or not. It doesn't appear out of the blue so you have nothing to worry about.
I can confirm what the others have said about catheterising - its trivial.

BTW There are no dumb questions.
Its dumb answers that we do all we can to avoid.

[susieatmg]

Thanks Roger for the reply! I will probably come up with a few more questions for the group, and lots more after we get her home. I am now going to check into early services which will help her. She is doing quite well in her country with no services to speak of so she should have great advantages here, so want to see what is available in her area. Thanks and God Bless. Sue

[bcain]

Just to let you know. The bowel and bladder regimen can be time consuming. I would find out more about "some bladder and bowel control" See what they are doing for her at present. The ages of your 3 kids may make a difference as well. My 8yr old has become quite jealous lately of all the time I have to spend taking care of Sarah (18mos, SB S 1-3, no shunt, cathing every 3-4 hrs. timed toileting after meals for BMs. Still unpredictable bowels. She walks well.

As for latex allergy, you can develop it at anytime, just like any allergy. Just avoid it the best you can. Testing is still a good idea. Also, find out if the child has had a reaction already. More likely to have another, possible worse reaction next time.

Best wishes for you and your family. Sounds as if you are going to bring this little one into your family. Let us know how it's going.

[valerie]

Welcome! i would just like to say, good for you for even thinking about this. I had a baby boy 11months ago today Cian & i didnt know he had sb until he was delivered. His legion is just above his bum also. The first year is the hardest i have been told & that is true i would say as i have had so many appointments but i can say thank god, they have quitened down now. i started catherising about 6 weeks ago & its fine, only takes a few mins, was very anxious at the start but a week into it & its fine. So dont worry & he doesnt feel uncomfortable at all. This little girl obviously needs that bit more attention than someone who doesnt have a disablilty but if she is anything like my son, she will bring you lots of joy also & the disability moves further into the backround. let us know how you go whatever you decide & you should be very proud of yourself either way. good luck....