help! we're considering adopting a child with spina bifida

[terrellgirl]

Hi all,

I'm Kristen in Olive Branch Misssissippi and I've just joined this forum because I fell in love with a little girl around 7-9 years old with spina bifida at an orphanage in China. We were there last month playing with the kids for a day. It was a fabulous day! I'll never forget it.

This child, Monica, is a sweet beautiful girl. She's in a wheelchair but I'm told she can get around inside on crutches for short distances. She can also move across the floor sitting on her bottom and using her hips to propell her. She can take herself to the bathroom too. I won't know her specific diagnosis or age until we can view her file.

I know nothing about spina bifida and I'm looking for someone to tell me about it because I'd like for us to adopt this little girl. We are already the parents of 6 kids ages 9-21 months. Two of our kids are sons from China, special needs kids, one who has now corrected bilateral club foot and the other, just home, who will soon have a corrected cleft palate. Our experience with special needs is ONLY with minor correctable needs.

My husband is very apprehensive about considering adopting Monica because he thinks she might be too much for us. He thinks we might not be able to be fair to all our kids, including her, because of the special care she would require.

Let me say that our family is used to lots of kids. All our kids do get attention from us and from each other. We order our lives that way. My husband is the youngest of 11 and most of his brothers and sisters have lots of kids too. Big families are the norm with us.

I would like to hear from you all about what we need to know about spina bifida care and treatment in order to make an informed decision about this little girl.

The great news is that even if we're not her forever family, the fact that I've asked about her has prompted her Social Welfare Institute to prepare her file for adoption. She is considered adoptable but never had a current file so anyone could see her and consider her as their daughter. Now she will have the chance at being part of a real family.

Thanks so much for any help any of you can give!!!!

Kristen
DH Pete
DS Michael 5-27-00
DD Mary Claret 7-22-02
DD Anne Catherine 12-27-04
DS Peter 3-28-05 (Hanzhong, Shaanxi)
DS Joseph 4-2-07 (Kunming, Yunnan)
DD Margaret 9-18-07

[Dodger67]

Welcome! :happy065:

Take a look around the various threads, there's masses of information here. Feel free to ask questions or comment on any topic.

At her age the major issues should already have been "stabilised" so the "burden of care" would probably be not as heavy as one might imagine.

[LisaJoy]

Welcome, Kristen! If she is mobile and can take care of her own bathroom needs, that is a good sign that she is on the road to ultimate independent living. Of course, her medical records will be essential -- you need to know whether she has shunted hydrocephalus, chiari malformation, kidney complications, and how her bladder and bowel are managed to get a better sense for the level of care she needs. But my guess is that your kids, young as they are, would take it in stride. Children are very adaptable and do not naturally have the fears and anxieties of adults. And if she's growing up in an orphanage, she's quite accustomed to being around other kids, most of whom probably do not have disabilities, so she is probably well socialized.

Definitely read around on this forum to get a sense for the range of issues that parents deal with, and see what more you can find out about her specific medical history.

[angel]

Kristen,

I want to welcome you to the group. I grew up just down the road from you in New Albany. I now live in Pennsylvania. I am 32 I have SB myleo level L4/L5. If you adopt her do you plan to take her to lebonheur in memphis. I spent 21 years going to lebonheur and they are excellent. I can recomend some doctors if you decide to go that route.
Welcome to the group!

Angel

[terrellgirl]

Thanks for the replies so far. I really appreciate it!
Angel, yes, we would take her to Lebonheur in Memphis.

[wendypal]

Kristen,
I think it's great your considering adopting this little girl. I will say, that raising a child with spina bifida has a few more challenges then the typical child, but most days for us is normal. Sam is cathed 4 times a day. He has a shunt and wears ankle foot orthotics on his feet. He , too, uses a wheelchair, but walks inside the house and short distances. He is by far my most joyful child. My other kids have also learned a lot from having Sam as their brother. They are more compassionate to other children. Sam draws our family closer. i think people with spina bifida are exceptionally special people. They are beautiful and bring so much joy to the people in their lives.
Wendy

[angel]

Thanks for the replies so far. I really appreciate it!
Angel, yes, we would take her to Lebonheur in Memphis.

That is where I went and I can give you names of some exceptionally wonderful doctors! Not only did they care for me but when my son was born (he has SBO) they cared for him as well.

Angel