Spina Bifida

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Spina Bifida

Postby manynums » Sun Feb 03, 2008 8:51 am

Our baby girl, Sasha, has Spina Bifida. It was caught on our 23 week ultrasound and confirmed by a Level II ultrasound on Friday.

We're doing really well with the news, actually. There was concern that she also had Hypoplastic Left Heart Syndrome (3 heart ventricles instead of 4), but she's got a great heart (according to the level II u/s). After hearing that your baby has a complete and strong heart, spina bifida is easier to swallow.

Anyway, does anyone have any comforting words or advice? The exposed spine is down pretty far, and there are concerns as to whether she'll walk and have normal urinary/bowel function.
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Postby kathy925 » Thu Feb 21, 2008 5:41 pm

I am sorry to hear that! However, try to think positive of the growing life inside that you and your dh created! My daughter had a gastroschesis (an opening an her abdominal wall w/ the insides out). The one thing that kept me focused and "going" was thinking of all that I could do to help her rather than thinking of any of the negative. It's of course easier said than done! Congrats by the way on the baby girl!
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Postby Char » Fri Feb 22, 2008 7:08 am

I do not understand what you are going through but I agree with Kathy. You have a special little girl growing inside you that you and your DH created. Try to remain positive. Did the doctor's mention if she was a candidtate for surgery while in utero? For some babies with Spina Bifida, depending on the severity, they can do some repairs while in your tummy. Perhaps you can look into this.

If you do not mind me asking, you said that it was caught on your 23rd week US...Did you have any other US before this one where they did not see it? Did you have AFP or NT scans done? I am asking because this was the primary focus of my NT scan and AFP. I opted out of the genetics portion of both tests and focused primary on neural tube defects and spina bifida.

I will keep you in my prayers and thoughts. Try remain positive and think of that sweetie pie in your tummy.
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Postby manynums » Sat Feb 23, 2008 11:54 am

We did not have any prenatal testing. We had a 17 week ultrasound but it was a disaster with a temp. tech. Sasha kept most of her lower body hidden at that scan, too.

It was very obvious at the 23 week scan. Her little spine is sticking out a wee bit from a hole in her back.

There is in-utero surgery for spina bifida, but it's only in the clinical trial stages. Due to a blood condition I have, I'm not an ideal candidate for the study. It's also a double blind study, so you have no guarantee that you will be picked for the surgery. It's also only in 3 hospitals nationwide and you have to be willing to stay from 25 weeks on. With a son and husband at home, this was simply not an option. If I could have just booked the surgery, I would have.

So, it wasn't a good fit. We have an awesome neurosurgeon lined up at St. Louis Children's Hospital, just two hours from our home.

We have no doubt that our daughter is very special and will be loved regardless. This was one of the reasons we declined the NT scan and genetic tests in the first place, as we never intended to terminate even if something was "wrong". We knew many concerns would be picked up on the traditional ultrasounds and are grateful we are aware so we can plan for my care as well as her care.

This is how she is, just as my son is the way he is. Our joy is exponential for her arrival. We are staying very positive...and I have no doubt that we have been blessed with her for many reasons.

I'm just looking for advice from mommies who have "been there".
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Postby JNL07 » Fri May 16, 2008 3:42 pm

let me just start by telling you that everything will be okay!!! my son... who is 2 now has spinabifida. they caught it on my 20 week u/s and i was totally shocked... the first found fluid on the brain and then sent me to the hospital to have an amniocentesis(when they take a needle into your stomach to extract some of the amniotic fluid for testing) 2 weeks later it came back that he had spinabifida! we were soo devistated... all the doctors kept telling me through my pregnancy that they didnt know how it was going to turn out bc they didnt know how low it was on the spine. they couldnt see it on u/s... they did and MRI on my stomach to see the sac on the spine of the baby and found that it was very low down ( the lumbar secral region). a few doctors told me as soon as i was going into my c section that i need to be prepared for the baby to be paralyzed.... i just wouldnt accept it. from day one i prayed for God to heal my baby and my broken heart. anyways.... he came out KICKING and screaming! when he was in my belly i would always feel him kicking me and they always said well thats just probably his arms punching you. dont ever let them bring you down and tell you things that they dont know. Only God knows whats going to happen and hes looking out for ur beautiful little baby! to this day Noah(my son) is very strong, hes starting to walk, and hes just like a normal kid. people dont believe me when i tell them he has sb. it took him a little longer to do physical things like a normal baby but now hes doing just great! i have my lord and savior to thank for that!!!! God Bless you guys!!!! i hope this helps!!
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Postby mamalynn » Sat May 17, 2008 3:26 pm

the only advice i can give you is to keep a positive attitude (just like you are now!), research all you can, find a local support group, let people know when you are okay and let them know when you aren't. ask the doc a bazillion questions or have him explain things you do not understand. sometimes taking a friend to appointments with you helps because your mind is processing so many things at once, it is hard to really listen. a friend can help remind you what to ask or what was said. subscribe to a message board or newsletter concerning spina bifida. i did this when i got pj's diagnoses. take one day at a time. this board is fantastic for support. much of my support came from my due date club, but the entire board is a great source of support. celebrate your special pregancy and those around you will too! lastly, congrats to you!

**edited to say sorry for not even realizing she is already here!!! congrats! she is beautiful!
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Postby manynums » Sat May 17, 2008 8:54 pm

thanks ladies...

she is doing very well tonight at the NICU. she had her spinal closure surgery on wednesday and shunt inserted on friday.

her legs aren't fully functional. they don't bend at the knee and the part from the knee to the ankle is short and skinny. and she has clubbed feet. they're still gorgeous to me and we have a team of some of the country's best docs working on her.

sasha's lesion is in the L2 region and was very large (10cm long by 5 cm wide). the scar on her back is very big and scary right now and they had to shave off the front right section of hair to put in the shunt. i don't imagine she'll walk, but we have prayed continuously throughout this pregnancy to find the answers in this. i am confident they will be revealed at the right time.

today i had the best time holding her hand and staring into her eyes and singing to her. she got to eat breastmilk for the first time today (through her NG tube) and i felt like i was her mother. it was the first day she has been fully awake enough to do something like that. i won't get to hold her for a few more days, but i'll be so grateful when i do. she is our little miracle! we have cried a lot, but it's getting easier every day.

thanks for your support...i'll KUP.
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Postby mamalynn » Sun May 18, 2008 8:28 am

it is good to hear that she is doing well! yeah for eating mama's breastmilk too! you will soon hold her in your arms and experience that feeling you have have so longed for. it will always be hard not knowing what the future holds, but just look how far your strength and faith has gotten you. i have no doubt sasha will surprise you with her abilities. thanks for the update and take care!
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Postby laurab007 » Wed May 21, 2008 9:07 pm

Congratulations on the birth of your baby. I'm glad she is doing well and that you are bonding with her. She shares a birthday with my daughter! Best of luck to you and your family.
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