I have a little daycare girl who's four that I've watched for 1 1/2 years now (part time--two days a week). Her parents tried for over 2 1/2 years to have another child and finally after trying several different fertility treatments (including invetro--didn't harvest any good eggs) they gave up and adopted a beautiful little boy in March (he was born in Feb). Not two weeks after they brought him home they found out she was pregnant! I talked to mom this morning and she said they've found out through amnio that the new baby has spina bifida. They going to try and have the in-utro (sp) surgery to correct as much as possible before he's born (another boy!). She said if they do the surgery they'll take the baby via c-section at 33 weeks. That would make him only 6 months younger than the little guy they adopted. WOW! Anyway, I've done some research as to what spina bifida is and the different degrees of severity, but I'd like to hear of people that know kids that have actually had it and how it affected them. She said it looked like this hole is at the L4 vetebra and they're hoping there's not going to be brain damage. She said, "Just imagine our Christmas card picture--a red head, a little hispanic (the adopted one) and a baby in a wheel-chair!" She really has a great outlook (with a faith that is very strong). Also, I asked her if there was anything I could do for them and she said just pray. No problem there, but is there anything else??? If she has the surgery they'll have to go to Philly for it and she'll have to stay until the baby's born. The other two kids will stay with her sister out there. I'd like to do something, but don't know what. Thanx for any stories or suggestions of how to help. This is the sweetest family and the mom does at-home pediatric physical therapy, so she'll be the best mom for a special needs child. I feel so bad for them. This would be quite a blow for any family. Anyway, thanx again.

By Marcia on Tuesday, July 20, 2004 - 01:18 am:

I'll bet that she's worked with kids with SB, since she's a physio. I've worked with many kids with it.

It's very hard to guess how the little guy will be affected. Some people have SB and are hardly aware they have it, and some are severely affected. She could be dealing with lots of medical needs, or next to none.

The kids I've worked with have all had to be catheterized, which is pretty much guaranteed.
Most of them were able to use standers and walkers, and had average learning abilities.
They have all been able to eat orally, although one little girl should have had a feeding tube. That little one also had a chiari malformation. She was also the only one that was non verbal.

I'm on some great lists, and okbabes@yahoogroups.com is for parents of small kids with special needs. One of the moms had a little girl with SB, and was an adoptive mom.

It's wonderful to hear that your friend has such a positive outlook. What a difference that will make for all of them!

By Bobbie~moderatr on Wednesday, July 21, 2004 - 01:05 am:

Cat, what about doing a care package for while she is in the hospital. Deck of playing cards, puzzle books. Maybe even a couple of small jig saw puzzles. Pad of paper, envelopes and stamps. Hand lotion, mints, chocolates, granola bars. If you know of an author she likes maybe a book. Go to a Christian Books store and get her a new release of a funny book. Those type of things. Wonder if the hospital she is in has the email, like they had in the hospital where Mike was. You could send her a daily email if they did. Just something for her to read to let her know that she is being thought about.

You could also look into doing a meal plan for her first week home. When I had the girls the women at our church brought us in a meal every night for the first week. Or maybe even just the first night home meal. Find out what day they will be coming home if it is known and have a meal ready to deliver when they get in. Not to visit just a drop off at the door type of delivery. or what about a frozen meal or a couple of them given to her right before she leaves for when they get back. Something DH can pull out and heat up.

I will do some more thinking on this..

As far as him having SB, sounds like he was given the right mom doesn't it? I have known one person that had SB. He was in a wheel chair. Body was frail but his mind was sharp. He had a great since of humor too. Not sure whatever happened to him. We graduated and then a couple of years later I moved.

Prayers for your friend and her family. If I think of anything else I will post back...

By Brandy on Tuesday, September 27, 2005 - 11:58 pm:

Was wondering how the child is doing now?

By Cat on Wednesday, September 28, 2005 - 02:05 pm:

He's doing great!!! Thanx for asking, Brandy. They ended up not doing the inuetro surgery because of the mom's fibroid tumors. They did take him at about 37 weeks via c-section, though. They were afraid going through the birth canal would do more damage. He was born in November of last year, right before Thanksgiving. He has some hearing and vision problems, but they're hoping at least the vision can be corrected with surgery. He has enough hearing loss to warrent a hearing aid, but not enough for cocular (sp?) inplants. He had a shunt put in to help drain the fluid that builds up in his spine. He DOES have motor skills though and they hope he will eventually walk! He's the cutest little guy! He's got strawberry blond hair like his big sister and looks just like his daddy. I need to give the mom a call. I haven't talked to her for a month or so.

By Brandy on Wednesday, September 28, 2005 - 02:12 pm:

Awesome news Cat i am so glad for him and his family = ) i was especially interested in this title because i don't know if you know but i have spina bifida also only the mildest form though thank goodness = )

By Acjmom on Wednesday, August 30, 2006 - 03:18 pm:

just had to add to the convo here.... my mother was born with spina bifida, severe scoliosis, and one kidney. she was not expected to live long, but after the docs kept extending that time limit, and she kept passing it, they finally gave up. then they told her she would never have children. when she got preg with my brother, they told her she'd have to be in bed the whole preg.... she went out dancing the night before she went into labor with him! there were some complications near the end of her preg with me though... her uterus ruptured, and we both could have died, but God saw otherwise!

she has an awesome miraculous story... i'll try to give a brief run-down. she was born with 6 vertebrae missing in her lower spine, and 3 curvatures (unheard of!). the 3rd curve was in the area of the spina bifida. she was also paralyzed from the waist down due to these problems. she was prayed for at a tent revival as an infant, and the paralysis was instantly gone! the next x-ray showed she only had 2 missing vertebrae! they thought she would never walk, but she did, and even roller-skated frequently. she had 2 herrington rods put in her back to partially correct the 2 upper curves in her spine (i forget what age).

she is still alive and well today at 54 years of age, although she is on strong medication for back pain. she was always very active with our education, and can still chase after the grandkids. my point? i serve a great big God, who still baffles doctors and defies the odds today!

oh yeah, these things are supposed to be genetic/hereditary.... my brother, myself, nor my children have any of these problems!

By Brandy on Thursday, August 31, 2006 - 12:07 am:

That's wonderful Lorissa = )