21 weeks pregnant

[LaceyRae]

I am 21 weeks pregnant with my second son and we were just told he has SB. We were so shocked we didn't ask much about where it was, or what type it is, all we know is that it is in his lower back, exact words were "it's not the lowest it could be, but it is fairly low." I also asked if he had hydro yet...He said that he hadn't developed that but it doesn't mean he won't. Do most babies have it right away with the SB or does it come later in the third trimester?? I'm also really scared about him having surgery so early in his life and not being able to hold him and breastfeed in the first days of his life, any experiences to share?? I know every baby is different and that no questions that I REALLY wanna know can be answered, but it's nice to hear from parents that have been there. Thank you sooo much and God bless!

[Dodger67]

Welcome!
:happy065:
Take some time to look around the conversations - particularly the ones about pregnancy and birth. You'll see that you need to treat the pesimism of the doctors with a good dose of scepticism. They tend to come up with the worst possible scenarios.
We can help you find doctors who actually know SB. Most obstetricians and neonatologists know next to nothing and the little they do know is usually outdated.

[cadon's mum]

Hi, my name is lorraine and i have a 15 week old son with sb and hydro, his hydro showed up on my 20 week scan but was only mild, it stayed that way right up until he was 4 weeks old and then suddenly his head grew by 2cm in a week he had emergency shunt surgery and touch wood we have not had any problems since. I was also worried about surgery and holding/ feeding. I got to hold him for about 15 mins at birth before he went to NICU and then 2 days after surgery i was able to start handling him. he was on a glucose drip for the first two days so i just expressed until he was able to feed. He was fed through a gastric tube until day 5 and then he was able to feed properly. Just want to say congratulations and good luck.

[LaceyRae]

Thank you for sharing your experience! We have a great hospital here in Des Moines, IA that I have faith in :) I know doctors have to tell you the worst, and thats ok. It's not up to the doctors what happens to my son, it's God's plan. I'm just keeping positive and enjoying my pregnancy! I'm still sooooo excited to have another baby no matter what the outcome is!

[LisaJoy]

LaceyRae,

Welcome aboard and congratulations on your baby. Like Dodger said, read around in some of the old threads, and then pose whatever questions you want.

Lisa (45, sb/lipomyelomeningocele, etc.)

[NEMOM]

We did not know our daughter had sb until she was born. I had a home birth and everything went wonderful. I nursed her twice before going to the hospital and while waiting for the airplane from the children's hospital to arrive, I nursed her again. I was very grateful as I wanted her to have the initial colustrum. Of course, once I got to the children's hospital they would not allow me to nurse, even though she was there 7 hours before they did surgery. They have to have not nursed in the previous 4 hours before surgery.

You could ask if you could nurse at least once right after your baby is born. Of course it would depend on how things went. But if all goes well and they don't have the OR scheduled for right after birth they may consider it.

I really don't know, but it doesn't hurt to ask.

Congratulations! I wouldn't trade my girl for anything. What a gift from God!

Cindy

[smoop]

Hi LaceyRae,
My name is Renee and my 2nd child was born with SB. I was told during pregnancy that her level was L1 but it ended up being more like L3-4 range. She had very mild hydro during pregnancy. In fact, she made it until she was 3 months old until she needed her shunt. Analise had a very large hole in her back which required extensive repair at birth. She was on her stomach in the NICU for 2 entire weeks. I was determined to breastfeed. I pumped a whole lot during those 2 weeks and was finally able to hold her on her 3rd day of life to nurse. It was hard positioning her but we managed and she turned out to be a champion nurser! May God give you an insurmountable peace while you endure these final months of pregnancy. Many blessings to you.

[valerie]

Hi my name is Valerie, i have an 11month old baby boy Cian. His Level is L1/L2. We did not know until he was born that he had Myelo SB. He didnt have hydro & when born his head was fine. His back was closed on day 5 & his head was monitored on a regular basis to see did it require the shunt, eventually at 7 months he got the shunt & has been ok thankfully. I know it isnt easy on you as you are thinking all sorts as i still have days like that but i never thought i would say this but it does get easier & his personality is so sweet, he loves playing & being entertained. You have a long road ahead of you but i'm sure you, your baby & family will do just fine xxx

[valerie]

Forgot to mention, Cian was born at 1.44am & i was able to breastfeed him later that morning about 8

[abbysdad]

Hi LaceyRae (and anyone else newly-diagnosed reading this!),

Your post sounds so familiar! Our Abby was diagnosed with Spina Bifida at the 27 week scan in Feb this year (having initially been diagnosed with a possibly-fatal 'missing cerebellum'at the 22 week scan). She was born 5 weeks ago and, while a lot has happened in those 5 weeks, I've been surprised by how manageable it has all been so far (largely thanks to getting great support) and how quickly we're settling into normal family life now that she's home. So hang in there! If our experience is anything to go by, the reality is even better than we hoped :-)

In terms of holding & breastfeeding in the first days - as you say, everyone will have a different experience. For what it's worth, we got to hold Abby nearly all the first day & she breastfed well :-) She transferred to another hospital on the second day, and had her back closure late on the third day. While Tara and she were in different hospitals, Tara pumped for her (and fed her when she got to visit). It was tough with them being in different hospitals, but not as tough as expected and it didn't last long.

Tara (Abbysmum) & I have a facebook group for Abby, where we're journaling her journey (and ours!) for family & friends. If it would help to read our experiences, you'd be most welcome there (that goes for anyone else from this board too). The group is here (http://www.facebook.com/group.php?gid=85334196618) and the journal is the group's 'discussion board' here (http://www.facebook.com/board.php?uid=85334196618). It's a private group, so you have to request to join, but you'd be most welcome there (just send me a message to let me know your facebook name so I recognise it when the request comes in).

Hang in there - your great attitude will carry you a long way and your son is going to make it all worthwhile :-) All the best,

John

[angel]

i just requested to join your facebook page about abby. the name is carla not angel there in case you wondered who it was :)

Angel

[abbysdad]

I've added you now.