@jellybean3 what a tremendous shock to you. I think spina bifida comes in a very wide variety of ranges. it might be tempting to only think of the most challenging or severe form because that is what is most visible. Lots of people with spina bifida go on to lead successful and happy lives. Thinking of you.
jellybellybean3 What week did you have your NT scan? I am 13 weeks and haven't had one. It hasn't even been mentioned. My next ultrasound is 20 weeks for the anatomy scan. My mother had a baby with anacephaly/spina bifida, so it's a concern of mine. I have been taking the extra folic acid as well.
I really hope everything goes well for you.
a) They can do the AFP blood test plus a level 2 ultrasound at about 16w to specifically screen for neural tube defects. (I believe it's called sequential screening)
b) It is routine to check for neural tube defects on the a/s.
c) It's moot now, but all prenatals have folic acid. Were you taking more folic acid on top of the folic acid already in a prenatal?
Married July 2009, Rescue dog adopted September 2010, DS born June 2012
If you ever feel like chatting feel free to PM me. I grew up family friends with two boys who had spina bifida and would be happy to share my experiences with you.
jellybellybean3 What week did you have your NT scan? I am 13 weeks and haven't had one. It hasn't even been mentioned. My next ultrasound is 20 weeks for the anatomy scan. My mother had a baby with anacephaly/spina bifida, so it's a concern of mine. I have been taking the extra folic acid as well.
I really hope everything goes well for you.
a) They can do the AFP blood test plus a level 2 ultrasound at about 16w to specifically screen for neural tube defects. (I believe it's called sequential screening)
b) It is routine to check for neural tube defects on the a/s.
c) It's moot now, but all prenatals have folic acid. Were you taking more folic acid on top of the folic acid already in a prenatal?
Yes I was taking an extra folic acid along with my prenatals, even for a few months before I was pregnant. I hadn't taken extra with my other two, but weirdly enough some gut instinct had me doubling up on it. It doesn't run in our family so it was a huge shock to hear the news.
Aw thanks for the well wishes you guys! The support means a ton, especially since we aren't really telling anyone anything until we have more info on severity, etc. And yes it can be such a broad diagnosis that I'm praying for the best in this situation.
Baby #3 due February. Dx with Spina Bifida Myelo "good things are coming down the road, just don't stop walking"
I'm sorry you're going through the stress of not knowing exactly what's going on and that you have to wait so long for more information. And no one wants to hear there's something going on with their baby. Praying that you receive positive news on the 22nd and that you guys can remain as calm as possible until then.
@jellybellybean3 I'm so sorry to hear your little one has spina bifida! Prayers that he/she has a very mild case. I wish I knew more details, but there's a mom of twins I met once in my son's play group circles. I was really surprised to learn one of them has spina bifida. She has little support braces on her legs to help her walk, but she gets around the playground great and keeps up with all the other two year olds and otherwise seems fine.
@jellybellybean3 I'm so sorry you are going through this. You are correct when you say what will be , will be. I am praying for you and your baby. I hope you receive some good news on the 22nd at your scan. Lots of prayers and support.
I'm so sorry that you have to deal with such overwhelming news @jellybellybean3. Will definitely keep you guys in my thoughts, and hope for more encouraging news at your next appointment!
@jellybean3 - my sister has a mild neural tube defect, so I was on extra folic acid and had additional screening. Many neural tube defects are mild and can be easily corrected.
Well wishes for you and your LO.
Married July 2009, Rescue dog adopted September 2010, DS born June 2012
@jellybellybean3 I've been thinking of you and your family a lot. You have all my positive thoughts and prayers for an excellent prognosis and I hope time isn't creeping by as you wait for the appointment.
@jellybellybean3 keeping your family and your LO in my thoughts. You seem to be handling this like a champ, and a positive mentality can only help, right? If it helps you at all, DH's father was born with a mild case of spina bifida and you couldn't even tell. He had a small hole at the small of his back but that's it. Here's hoping that your LO will have a very mild case like that as well.
Make sure you're taking time for yourself to relax because it's tempting to sit there and obsess about it when there's nothing you can really do
@jellybellybean3 I'm so sorry. I was high risk for spina bifida during both of my pregnancies due to an elevated AFP level. Are you anywhere near Children's Hospital of Philadelphia? Their center for fetal surgery is supposed to be amazing, and they have had really good success on some patients with surgeries in utero to close the lesions. If you can find it somewhere, Twice Born on PBS is a documentary about the surgery center and I found it to be really emotional but very informative. All the hugs and love to you & your family.
@jellybellybean3 I'm so sorry. I was high risk for spina bifida during both of my pregnancies due to an elevated AFP level. Are you anywhere near Children's Hospital of Philadelphia? Their center for fetal surgery is supposed to be amazing, and they have had really good success on some patients with surgeries in utero to close the lesions. If you can find it somewhere, Twice Born on PBS is a documentary about the surgery center and I found it to be really emotional but very informative. All the hugs and love to you & your family.
I'm actually in Canada and he told me that they don't do surgeries in utero here .. Only in the States. I don't even know why he brought it up maybe in case I thought that was an option? Very frustrating not to have that as a possible future option when I have heard so many great things about it. I don't know if I can get it done in the US being from Canada but depending on the results I sure will be looking into it.
And those of you with positive stories rock! Exactly what I need to hear right now. I've done sooo much research and most of it is scary, but then I hear these stories and it gives me hope. I've been reading an older Spina Bifida forum and there are a few positive stories there too. So I'm not going to let Google get me down yet. I will update you guys after the appointment, regardless of what I'm told.
Baby #3 due February. Dx with Spina Bifida Myelo "good things are coming down the road, just don't stop walking"
Ugh that sucks @jellybelly03, at least you guys have awesome (and free) healthcare though, right? I'm sure your doctor wouldn't have mentioned it if there wasn't a way to work around the system though. Also, I know they can do a surgery to close the lesions immediately after the baby is born, so maybe they've found that the risk doesn't always outweigh the reward for in utero vs newborn surgery?
Also I'm sure this is small consolation, but in time you will adjust to a new normal and you and your baby will still love each other because nothing can change that at all. If it helps, my husband's cousin was born with some leg deformities and has never been able to walk without crutches. However, he's a very happy 20 something now with a high powered career as a scientific researcher. He's just an all around great guy and the crutches have never held him back in life.
Sorry I didn't update yesterday we ended up getting home pretty late and I wasn't in the mood to explain things. The appointment actually didn't go as bad as I was expecting but I really don't have much more info. One reason being he forgot to book and bring in the neurosurgeon.. How does that happen? Ugh. But I had a pretty detailed ultrasound and they *thought* they could tell a few things. The lesion is really low, so that's a good sign in itself because the higher the lesion the more damage there is. He also said he thinks (but isn't positive) that the lesion is closed, which is great news for Spina Bifida. Most lesions are open, but having the skin covering it helps prevent further damage as the pregnancy progresses. As of now he doesn't see any hydrocephalus (fluid in the brain), clubbed foot, or abnormal head shape/size which are all common with Spina Bifida. He did say that can change though.. Fingers crossed it doesn't. He wasn't able to tell us too much but he went from talking about our "options" aka termination to not bringing it up this time (thank god, not that it would have changed our minds anyways). More ultrasounds in the future to monitor baby and see if we can get a better picture of what is going on, but he said regardless we won't know how severe it actually is until baby is born. And of course we are probably still looking at issues throughout babies life: Bowel, bladder, walking, etc. But it's a wait and see. I'm thankful for the good news we have heard so far and I'm celebrating it. This little girl might be different, but we will still make sure she has the best chance at a "normal" life full of love. Thanks for all your support through this pure hell of 6 weeks :x :x
Baby #3 due February. Dx with Spina Bifida Myelo "good things are coming down the road, just don't stop walking"
@jellybellybean3 I've been stalking this thread since yesterday--I'm so glad the news was mostly positive! First, I can't imagine how frustrated you are that the neurosurgeon wasn't booked--you've already had to wait for answers. That's super crappy and really unfair. Second, I'm so glad they think the lesion is covered by skin and that there's no hydrocephalus. I'll keep hoping and praying that all continues to look normal through the rest of your pregnancy. I'm so sorry you have to continue waiting until February to get real answers, but I'm glad the doctor is more optimistic. We had a couple of students with (what sounds like similar lesions), while potty training was delayed until the beginning of Kindergarten they were typical in every other way (and some of my favorite students ever). Finally, she's one lucky little girl to have you as a mom--you're doing a terrific job loving and advocating for her!
Re: Elevated risk of neural tube defect
If you ever feel like chatting feel free to PM me. I grew up family friends with two boys who had spina bifida and would be happy to share my experiences with you.
Yes I was taking an extra folic acid along with my prenatals, even for a few months before I was pregnant. I hadn't taken extra with my other two, but weirdly enough some gut instinct had me doubling up on it. It doesn't run in our family so it was a huge shock to hear the news.
Aw thanks for the well wishes you guys! The support means a ton, especially since we aren't really telling anyone anything until we have more info on severity, etc. And yes it can be such a broad diagnosis that I'm praying for the best in this situation.
Praying that you receive positive news on the 22nd and that you guys can remain as calm as possible until then.
Prayers that he/she has a very mild case.
I wish I knew more details, but there's a mom of twins I met once in my son's play group circles. I was really surprised to learn one of them has spina bifida. She has little support braces on her legs to help her walk, but she gets around the playground great and keeps up with all the other two year olds and otherwise seems fine.
Make sure you're taking time for yourself to relax because it's tempting to sit there and obsess about it when there's nothing you can really do
And those of you with positive stories rock! Exactly what I need to hear right now. I've done sooo much research and most of it is scary, but then I hear these stories and it gives me hope. I've been reading an older Spina Bifida forum and there are a few positive stories there too. So I'm not going to let Google get me down yet. I will update you guys after the appointment, regardless of what I'm told.
Also I'm sure this is small consolation, but in time you will adjust to a new normal and you and your baby will still love each other because nothing can change that at all. If it helps, my husband's cousin was born with some leg deformities and has never been able to walk without crutches. However, he's a very happy 20 something now with a high powered career as a scientific researcher. He's just an all around great guy and the crutches have never held him back in life.