Hi There

[stefaniemiller]

Hi Everyone,

I am 35 weeks pregnant and about a month ago we found out our son has spina bifida. I was wondering if someone out there could give me some advice as to how to take care of a child with spina bifida. Can you breastfeed? What are the restrictions when it comes to bathing your baby? Can he lay on his back while sleeping? Will he be in pain while I hold him? I know it's a lot of questions, but I'm kind of new to this. Thank you!

Stefanie

[smoop]

Hi Stephanie--

You're getting close to having your new baby. I bet you're anxious! My daughter was born 4 years ago having SB & hydrocephalus. I had absolutely no problems nursing Analise. In fact, that little stinker wouldn't take a bottle whatsoever. I breastfed her for one year. As for bathing, you'll just need to be careful initially with the back closure & shunt sight. Now Analise had a HUGE hole in her back which required extensive surgery to close so we just sponged bathed her for a couple of weeks until things were healed.

To be honest, we just treated her as you would a healthy baby, for the most part. She had to sleep on her side for a couple of weeks. We just rolled up a receiving blanket and placed it along her side so she wouldn't roll over on it. But again, her scar was enormous. Analise used all the typical baby items: bouncy seat, swing, exersaucer, etc.

Be careful to watch out for baby items that contain latex. If you're going to bottle fed at all be sure not to purchase nipples that contain latex (they're usually amber in color) and pacifiers.

[XoBLoNDiE85]

Hi there! Welcome to the board...you are getting close.! We are the same assmoop....took a few weeks of side sleeping and sponge baths while she was healing. I started nursing her on day 3 i think...before that she was on a IV and basically sleeping the days before that because of the meds from surgery. After all the initial shock and NICU days are over and your little baby is home everything is just how it would be with a newborn baby (might have to cath but other than that its the same) These little ones are amazing!!!

[joybell322]

Welcome! You'll be amazed at how much like any newborn yours will be, except he will be yours! I breastfed Liz until she was 6 weeks & had to stop due to acid reflux. I can't even remember how they told me to let her sleep, it seems so long ago. She's almost 7 now :( Liz did have a cast on her clubbed foot, but other than that it was basically the same as my other 2. Enjoy him and take lots of pictures!

[leigh828]

Hi Stefanie! Like the others have said, you will be AMAZED at how "typical" your baby will be. Once we were out of the hospital we were told that he could sleep on his back, we were a bit nervous about that so we had him sleep on his side for a few weeks (we did the rolled up recieving blanket too). He could also take a bath once his belly button fell off. He had this weird tape stuff over his incision that could get wet. It fell off when he was about 3 weeks old. The only thing that I can think of is to buy lots of one piece outfits, we didn't use anything with a waistband until he was at least a month, and even then we pretty much used one piece things. You are getting so close!! :)

[Dodger67]

Welcome Stefanie! :happy065:

[janjanwhit]

I nursed my baby on day three and expressed for him before that. He was bathed after a week and could comfotably lie on his back then. He never appeared to be in pain. Never cried unless he was hungry. You will be amazed how normal he is. The doctors will set you up for the worst though. I keep forgetting Fergus even has sb. He is 5 months old now and the only thing that reminds me is that he has a vp shunt. People are so surprised when they see him. You will have to get used to people saying " but he looks so normal!". I am not sure what they expect him to look like. Sb is so understood by most people. Trust me, pregnancy is the worst bit. Once you see him it gets so much easier!