Hi

[Bre]

Hi my name is Sabrina and I'm 22 weeks pregnant with my first baby. We just found out that our baby Bella will be born with spina bifida and hydro. I have lots of questions and I came across this website and love it. Well one of my mane questions is about the hydro at 20weeks the fluid was measuring 1.3 cm is that bad and if not how much is bad? The doctors belive that her lesion is on her lower lumbar area. And that it might be skin covered because when I had the prenantal testing they came back all negative. I'm so confused and scared I have no idea what to expect and how will she be. I love my baby more than anything and waited a long time for her. So any help would be great. And if any moms can tell me how much hydro their babies were born with would be great. Thanks

[angel]

Hi Bre,

I just wanted to welcome you to the group. My name is Angel I am 32 years old and I have SB level L4/L5 (lower lumbar area as well) I don't have hydro so I don't really know much about it.
I can tell you that she will be a blessing! She will have a great life just remember to treat her as you would if she didn't have SB. That is the key to a happy, and independent child.
I have had a fantastic life, I have a 13 year old son who has SBO. I have a 13 year old stepson, wonderful husband and everything I ever really wanted out of life.

She will be great and we are so glad you found us.

Angel

[mom2alyssa]

hi and welcome to the group. i'm sure you are swamped with questions but that is okay. so many of us have been through it that you aren't alone. my daughter alyssa who is 4 now how SB and Hydro. I don't recall to what degree it measured, but i'll try and check old records. I wouldn't necessarily be too concerned even if the ventricles measure high. once the shunt goes in, it will release all of that fluid build-up.

if i can help in any way, let me know.
kim

[Dodger67]

Hello Sabrina and Bella
Welcome! :happy065:

I'm 42 years old, my lesion is at L3 (mid-lumbar). I'm an IT nerd and studying to teach high school.

Unfortunately it is impossible to predict with any accuracy how Bella will be affected. You will just have to wait and see.

Don't forget to breathe!

[smoop]

Hello. My name is Renee and I'm the mother of a 4.5 year old daughter with SB. Analise functions around L3-4ish and currently walks with long leg braces and crutches.

When I was 29 weeks pregnant Ana's hydro was measuring 1.2/1.5cm. And she ended up not needing a shunt until she was 3 months of age. We thought for a little while that she may not need one at all but as it slowly progressed the shunt was a must.

I know this is a very difficult time for you. Just hang in there and you'll soon be holding your baby! Like Dodger said, everything is just a wait & see at this point.

[valerie]

Welcome to the group. Congrats on having a baby. Your head must be going around in circles with all the questions. Take time to breathe and take it all in. I have a 18month old boy Cian, we didnt know about his SB and hydro till he was born. He is T12/L1, high lumber. He is doing great, cammando crawling really quickly. He didnt need a shunt until 7months, we thought he would do without but he needed it. Your little girls lesion is low, everyone child with SB is different so you wont know until your baby is born but i am sure she will be beautiful and i hope all goes well for you xx

[LisaJoy]

Hi, and welcome! I'm Lisa -- 45. I have several types of closed spina bifida (no hydro). I walk with one brace & crutch; I'm also a college professor. Your daughter will do great! I just love her name: Bella, beautiful.

What part of the world are you in? We have members from all over the globe, as you may have noticed.

[Lifeisgood]

Hi Bre,
Welcome to the site! I am 31 and have Spina-Bifida Occulta (a closed form) which was complicated by a tethered spinal cord and lipoma. (Sorry for the big words, basically my spine was getting stuck in place by a fatty benign tumor). I am able to walk unaided (with a limp) but have some of the other "gifts" of SB (bladder problems). I do not have hydro, but there are many other members or parents of kids who have it on this site and it seems like everyone does relatively well with it!
Even though I am sure that this must be a scary time for you and your family, you will see lots of stories on this site about how living with SB is not as scary as it seems! I wish you and your family the best and hope that you are able to enjoy your pregnancy!
Take care!

[ainemc]

Hi Sabrina,
My name is Aine, mum to baby Caitlin who is 6weeks old and has lumbo-sacral spina bifida. Congratulations on your pregnancy, your daughter has a lovely name!
That amount of fluid around your daughters would be considered mild, and the bones in your daughters head are very soft and so there is room for the excess fluid without harming your baby. At around 28 weeks my daughters fluid measured in excess of 15mm which the consultant considered severe. Then it went up to i think it was 22mm just before she was born. I was so worried, i imagined she would be born with a huge head and that the excess fluid would harm her. When she was born her head looked completely normal and it was another 2weeks before a shunt was placed, the doctors thought the excess fluid wasn't a concern until it started to increase quite quickly a few days before her shunt was placed. So please don't worry about that, if your daughter needs a shunt it is a operation thats routinely done and recovery from it is quick, Caitlin was out 2days after her shunt operation.

Anyhow, just wanted to welcome you to the group, ask anything you want, it really does help!

[Jill]

Hi Bre! I'm in the hospital right now with my 8 day old baby. :) He defect is at S1/S2. He was measuring btw 9-10mm all throughout my pregnancy. When he was born there was no sac, so the fluid had been coming out on it's own for some time. Once his back was closed (at 5 hours old) they hydro started to develop. His neuro put a shunt in at 3 days old and he's been doing great. The shunt scares the crap out of me, but like PP said, it's pretty common and not that scary in the big picture.

Pregnancy is a really rough time. Seeing and holding my little boy makes everything a million times easier and seems just so much easier to deal with. Big hugs and congratulations on Bella!