Pregnant

[SamiJo17]

Hello everyone, first I must say I already love this web site.. Anyways, I am currently 20 weeks pregnant, and have currently found out my son has Spina Bifida. Was really hard at first but now that I am learning more about it I'm not so scared and feel better about the situations.. Anybody have any information that would be helpful for me when he comes? Personal experience is always the best helper!

[chandra&travis]

Hello! Welcome & congratulations!!!! I am only a few weeks ahead of you in carrying one of these amazing babies, so I don't have a lot of experience to help you. I promise you that all of these great people have so much knowledge & would be happy to answer any of your questions, so my advice is to ask as many questions as you can think of! If you need anyone to talk to....please send me a message. Congrats again!

[laurabeth]

Congratulations! :)

As most mothers say on here, I found pregnancy to be the hardest part with all the unknowns. My son is now 3 months and is the most beautiful, happy baby in the entire world, he is also a little smarty pants - he is already holding things, baby talking and laughing all the time, he holds his head up, he is doing great!! His lesion was L1-L2, he was born on Sept 20th, had his back closure on the 21st and shunt placed on the 24th. We spent 15 days in the hospital in total. When I first found out I was terrified, but this site is a great resource!

I hope the rest of your pregnancy goes well !

[Dodger67]

Welcome on board! :happy065:

We are all here to support you, please use us.

[excitedmom]

Welcome and congratulations! I am a mother to a 6 wk old baby girl named Zoey. I found out at 32 wks pregnant that she had sb. Pregnancy was by far the hardest part because its all just "wait and see". She was born on Oct. 26th 2010 and was the most precious gift to my family which included two very happy siblings. She has myelomeningocele, and I don't know exactly what her lesion level is cuz I never asked. Her back closure was done by her neurosurgeon and plastic surgeon at a day old. She doesn't move her legs as far as we know but we aren't giving up hope :) she also has hydrocephalus and had a programmable vp shunt placed at a week old. She has a neurogenic bladder and we cath her every 4 hours. I was so scared before she got here and after taking her home at 17 days old she is just like my other 2 children, just had a rougher start ;) there's pics of her on my profile. It always helped me by looking at all thes beautiful babies pics.

[SamiJo17]

Thanks everyone. We deffinately know its going to be hard but I also know it will be worth it. My son also has clubbed feet, is that normal with SB or not always? The Doctor said its just proof that nerve damage has already been done. And at this point he has absolutely no fluid build up in his brain, which they say may build up over time but is a good sign so far. Thanks again everyone :)

[Dodger67]

Clubbed feet is very common with SB. It's not a big problem, normally it's fixed with casts or minor surgery if the casting doesn't work.

[LillyPie]

Hello! Congrats on your pregnancy. Pregnancy is the hardest part and once your son is here you will just LOVE him.

Jenn

[hope&faith]

Just wanted to say hello too. am so glad you found us here, feel free to ask any questions as things go along, or just if you need support. I found pregnancy to be the most stressful, like the others have said. just all of the uncertainty. When I was pregnant I found it most helpful to poke around this and other sites, and especially seeing the pictures of happy "normal" families since we were told the exact opposite from all of the "experts" at diagnosis. Hope any bit of my rambling helps at all
:) Holli
PS what part of NY are you from? I am from upstate; Rochester

[Jill]

Welcome! The next 20 weeks or so are going to be rough, but it's going to be so worth it.

Hmm... helpful information... well, prepare yourself for him needing a shunt. The majority of babies with SB end up getting one, so better to wrap your head around that now and just be thrilled if he doesn't need one rather than think he'll escape it and be crushed when he needs it. I think it's about 85% that get one. My son didn't have hydro until after they closed his back. The club feet is pretty common. I don't know if it's related to nerve damage, I've never heard that before. My son didn't have clubbed feet so I don't know a lot about it! Have a look at pictures of the babies after they're born as well - just so the post-surgery stuff doesn't scare you. There might be a lot of monitors and lines and seeing all of that on your new baby is not fun if you aren't prepared. Things will be good though. He'll light up your life. :)

[SamiJo17]

Just wanted to say hello too. am so glad you found us here, feel free to ask any questions as things go along, or just if you need support. I found pregnancy to be the most stressful, like the others have said. just all of the uncertainty. When I was pregnant I found it most helpful to poke around this and other sites, and especially seeing the pictures of happy "normal" families since we were told the exact opposite from all of the "experts" at diagnosis. Hope any bit of my rambling helps at all
:) Holli
PS what part of NY are you from? I am from upstate; Rochester
Thanks a bunch! I live in Hornell New York and since its a small town I go to Rochester for all the Doctors.. Did you go to Strong with your son for his SB? If so how wre the Drs there?

[SamiJo17]

Welcome! The next 20 weeks or so are going to be rough, but it's going to be so worth it.

Hmm... helpful information... well, prepare yourself for him needing a shunt. The majority of babies with SB end up getting one, so better to wrap your head around that now and just be thrilled if he doesn't need one rather than think he'll escape it and be crushed when he needs it. I think it's about 85% that get one. My son didn't have hydro until after they closed his back. The club feet is pretty common. I don't know if it's related to nerve damage, I've never heard that before. My son didn't have clubbed feet so I don't know a lot about it! Have a look at pictures of the babies after they're born as well - just so the post-surgery stuff doesn't scare you. There might be a lot of monitors and lines and seeing all of that on your new baby is not fun if you aren't prepared. Things will be good though. He'll light up your life. :)
Thanks a bunch. So far our baby doesnt have hydro started but we know that doesnt mean he wont get it. I've been looking around at all the babies on here. Deffinately looks scarey at first, but all the after pictures they are so cute and happy that it makes us feel better about whats to come. I deffinately will be looking around abunch and trying to learn as much as possible before he comes!

[JohnK]

Congratulations on your coming baby! The people on this site are amazingly helpful in answering questions about anything pertainig to SB. That said, I just wanted to tell you that the first couple of weeks after your baby is born are a total marathon, so try to eat right and get some rest. I know it sounds silly, but just getting some sleep helped my wife and I because an exhausted mind and body will just add to your stress! Take care of yourself!

[Dodger67]

Excellent advice John! You will struggle to take care of your baby if you don't first take care of yourself.

[hope&faith]

Thanks a bunch! I live in Hornell New York and since its a small town I go to Rochester for all the Doctors.. Did you go to Strong with your son for his SB? If so how wre the Drs there?

yes we go to Strong and overall we have been pleased. I will personal message you some specific information that I hope will be helpful.
:) Holli