Researching...for our family and possible addition

[EllieMae]

I was approached today with a prospective adoption of an infant with SB. His type is myelomeningocele. He is also club footed, and at this time has total bowel and bladder control. They said his records say he will not need a shunt, but can they tell that already?

What questions do I need to ask to find out what challenges we face? I have been researching and there are so many variables I am feeling overwhelmed.

I am a medical professional and we have a heart for special needs adoption. We have already adopted one child with special needs and it has been a amazingly easy transition for our family. I also have a biological child with special needs, so it is not a foreign concept to have therapy and appointments and so on. With the two I have now, those days are behind us as they have come so far they no longer need those things. Well, I should say at this time because you never know what the future holds.

Anyhow, I just want to be able to understand his condition completely. No matter the answers we intend to take him, I just want to make sure I understand what he will need from us to be as well taken care of as possible. I want him to have the best chances at the best quality of life he could have.

[leila]

We adopted our daughter at age 2 being told she had enlarged ventricles and thinking she may have a mild hydrocephalus. She did not have a shunt, and when we brought her home we had a CT scan of her head. The neurologist told us that after the age of 2, if hydro hasn't occurred she is clear. She still has slightly enlarged ventricles, but they are not worried about it becoming a problem.

Congrats on your adoption!

Kelly

[ainemc]

Hi there!
I'm Aine, mum to Caitlin who has sb, (myelomeningocele), hydro and chiari II.
There is so much different aspects to spina bifida..my daughter was diagnosed when i was 20weeks pregnant with her. She is now almost 5 months old and I have learnt so much about the condition but still learning new things all the time!
Most babies who require a shunt do so in the first few weeks of their life as the hydrocephalus is likely to develop after surgery has been performed to close the opening in the back. Around 10 - 15% of those with spina bifida do not develop hydrocephalus and so do not need a shunt. That being said, my cousin who also has sb did not need a shunt until the age of 8 so it is possible to need one in the future.
There are quite alot of appointments in the child's first year but after that the amount of appointments you child has should decrease. Usually the child will have physio and there may be some bladder and bowel issues but these can be fixed or managed. My daughter is catheterized 5times a day and is about to go onto medicine for her constitipation but besides that she is a normal, happy, bright little girl.
Are you adopting a boy or a girl and what age is he/she? Can I just say the child you are adopting is one lucky child to have such a giving and kind hearted family who are willing to give him a much better future!
Ask any questions you have, this forum is brilliant and the people are fantastic . Welcome to the group!

[LisaJoy]

What a wonderful thing for you to consider! How old is the baby and what level is her defect (i.e., S1, L2, etc.)?

If the baby gets past the first year without needing a shunt, s/he is not that likely to ever need one -- but as the others have said, there's the occasional odd occurrence.

Mobility depends on the level of defect, but even at that, it can be unpredictable. I think that most people on this site who have SB (including wheelchair users) would say that mobility challenges are really the least significant issue they face. The club foot is easily addressed; definitely not a big deal.

I'm a little suspicious that they say the baby is continent now -- babies are by definition not continent, so how would they know? At any rate, by far the most likely outcome is that the baby will eventually have bladder continence issues and possibly bowel as well. But again, these are usually manageable, although it can take a lot of trial and error to arrive at a combination of solutions that work for the individual child.

Overall, given your history with "special needs" kids, I would say that everything you've described sounds manageable. The vast majority of people with sb have normal intelligence, are mobile (with assistance or not), and achieve social continence through a variety of approaches. People with sb can have great quality of life and achieve independence, unless prevented by others from doing so.

[EllieMae]

He is almost 6 months old. I do not the level of his defect, I will find out.

I guess I meant by continent that he does not need to be cathed or any medication for bladder or bowels at this time.

The report they read to me said he will not need a shunt. I am not sure how they would know that now, but that is what they said. Not that it would matter if he had to have it, we would take care of that.

I am so excited. I am baby shopping already...can't wait to hold him and snuggle him in my arms.

Are there any special considerations to holding him? Do I have to be mindful of that area of his back, or is he just fine?

I know he is in double casts for his hips too.

[valerie]

Oh Congratulations.... My son had his back repaired at 5 days old and held him a few hours afterwards and he had no problems, just to be gentle which you will anyway... its all exciting... My son had his shunt at 7months, he was borderline for a while so your little man might not need one, you just have to wait and see but the longer he is without it, the less chance he needs one so fingers crossed!!! Good luck....

[dkagami]

I totally agree with Aine's comment "the child you are adopting is one lucky child to have such a giving and kind hearted family who are willing to give him a much better future!"

We also found out around 20 weeks into pregnancy and were told her vents were large and she would most likely need a shunt after her myelo closure, and she did. We have not had any issues with her shunt to date. Kaiya is 10 months tomorrow and has SB L2-L3 but function level is more like L3-L4. She has movement at the knee but not foot movement at all. She also had bilat. club feet which she has had serial casting and tenotomy to correct, now she is wearing a brace w/a bar on her feet at night to keep her feet corrected. It is said she has Arnold Chiai II but has showed no symptoms of this except for a slight struggle with chunky foods but she is getting better now :) As far as her bladder goes we have a test in June to figure out if she has a high/low pressure bladder and has had no reflux to date. We were sent home from the hospital catheterized 3 times a day but didn't get much so we went to once a day and at our last clinic (March) due to no reflux we were told to stop until we do the study in June :) She is on medication for constipation also.

As you can see from her pictures she is a very happy baby, very alert and curious. We love her so much. It is frustrating because the doctors can only tell you so much as far as walking capabilities, the child just has to show you what they are capable of. Kaiya has done well thus far and isn't crawling yet but we believe it will be soon :) Feel free to check our website (link at bottom) as well.

Good luck and I wish there were more people in the world like your family :)

Danielle

[EllieMae]

It just breaks my heart that he has been out there waiting for a family for SIX months because no one wanted a "special" baby. I wish I knew of him from day one, I would have been there.

[misty]

It just breaks my heart that he has been out there waiting for a family for SIX months because no one wanted a "special" baby. I wish I knew of him from day one, I would have been there.

Then go get him, momma! We'll be here to walk you through it! There is a great support system here! If you're ready, we're ready to help you!

BTW, I'm Misty, SB L5-S1. Welcome!:Banane21:

[EllieMae]

Okay, I have more info:

This is going to be an open adoption (if it happens). The parents are just too young (teenagers) to parent a baby with these kinds of needs. He is very loved, they just want better for him. Our first adoption is fully open, so we are fine with that. We know that it is the most unselfish thing to do to place a baby so it has better opportunities.

He does have a high percentage hydrocephalous and will need a shunt. They say he is very happy and interactive.

Still talking with the agency.

[janjanwhit]

Just treat him like a normal baby. I was able to hold my baby without thinking about his back scar after about 2 weeks. It is such a shame he has had to wait this long. I dont think people realise how non special SB really is. People with sb are normal people that have mobility issues and bowel and bladder obsticles to overcome. My baby is 14 months now and he is just a normal little boy. We dont have that many appointments for him. I sometimes forget that he has SB.

[Amnada]

Congrats to you!

A shunt is no big deal. The way I look at it, you either watch for symptoms of hydrocephalus, or you watch for symptoms of a shunt failure.
Nickolas had his back repaired at 24 hours, he has quite a large scar but it's healed and doesn't bother him, he wears pants and there isn't any special care for it. He also got a shunt at 3 weeks, in and out of the hospital in 3 days.

He is such a happy (and I'd like to say healthy - my definition of healthy) baby. I agree with Jan, he is just a normal baby - with some extra issues.

He does get cathed once a day, just as a precaution. We haven't had any bowel problems, but he's been exclusively breastfed, and we'll see what we get when we start some solids in 2 weeks.

There are alot of us moms who have blogs - if you are wondering about day to day, check them out!

[hope&faith]

just wanted to say congratulations and second and third others comments about this little boy being lucky to have a loving, supportive family to go to. It sounds like you have a good handle on things. This is a great group to ask any questions of or just get support. Best wishes,
Holli

[Dodger67]

Hi EllieMae
Welcome! :happy065:
Try to get hold of copies of all his medical records as soon as you are legally allowed.
You'll find that the answer to many of your questions about SB is unfortunately "Wait and see" because its such a variable condition.
Something you asked but hasn't been clearly answered: Lesion repair is normally done within a day or two of birth and take just a few weeks to heal, just watch that his scar doesn't get irritated or chaffed - scars generally have no sensation and will always be more delicate than surrounding normal skin - my lesion scar gets fungal infections quite often.

[fran]

Best wishes on your adoption. Our 14 month old daughter is adopted. She has Spina Bifida L3-L4, bialateral club feet, both hips are dislocated. She has a shunt. She is a sweet happy baby. She is just an absolute delight. We are so very blessed to have been given this child to love. We did meet her parents and have sent a few pictures and letters so that the biological parents can see that she is okay and I hope that they can tell that she is a cherished child. People will tell you what a wonderful thing you are doing to take a child with Spina Bifida but trust me that child will be such a gift to you and your family. We were told that children with SB are some of the hardest to find homes for. I think many people are just overwhelmed by all the information they are given and all that is wrong and forget about everything that is right. This is a child who just wants to be loved and cared for like any other child.