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XP May 2013- baby has Spina Bifida

I just got back from the perinatologist. When I first got there they did a long ultrasound. The baby wasn't really cooperating very much. But they did see the "bump"that they called it. The Dr. said it was low but couldn't say exactly where. The Dr. said the baby has the classic lemon and banana signs in the brain. The baby's legs were moving but he didn't know if that is involuntary or not. They did an amino. I didn't get much time to think about it. It happened really fast. The Dr. said it will check for chromosomal abnormalities and he said it would see if the fluid from the spine is leaking (I think, something to that effect) to see if it is open or closed. He thinks it is open. We will wait for the results, then he will make the referral to the neurosurgeon. He said they may do a fetal MRI but maybe not depending on what the neurosurgeon wants to do. He said the baby will have surgery after he is born. They will transfer him to the Children's hospital in Omaha. He said I still see my regular OB and see him also. I have gestational diabetes so they will keep an even closer eye on me. The Dr. was nice. I am 18 weeks 6 days so it seems there are a lot of unknowns. The baby is definitely a boy. His name will be Logan
. I feel at peace now that I know what it is. I have this sense of calm. Of course this isn't the news I wanted. But I already love this baby so much. Any other resources you can point me to? Do we have any facebook groups or anything? I am thinking of starting a blog. Just to keep track of my thoughts and baby's progress. I don't know.
Sorry for the rambling. Trying to think of everything the Dr. said.
Image and video hosting by TinyPic Lilypie Third Birthday tickers Lilypie Pregnancy tickers Expecting Logan James (Spina Bifida) May 2013. Follow our journey: http://littleloganjames.blogspot.com/

Re: XP May 2013- baby has Spina Bifida

  • Welcome.

    I saw your post this morning on 2nd tri. I don't know much about spina bifida, but I know there are plenty of support groups out there. I would check babycenter.com. I belong to a Down syndrome support group and there are several spin off groups too. Im sure you will find a group that will fit your needs.

    Please keep us informed on Logan's progress.

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  • Thank you. Will do. I found. Wonderful group if baby center ! :
    Image and video hosting by TinyPic Lilypie Third Birthday tickers Lilypie Pregnancy tickers Expecting Logan James (Spina Bifida) May 2013. Follow our journey: http://littleloganjames.blogspot.com/
  • I don't have any experience with SB, but did want to welcome you to the board.  I'm glad you found a good board on BBC to help!  
  • I work with SB babies on the medical supply side.  We do a TON of events with the SB chapters across the nation.  Our Children's here has a great support group, I am sure Omaha does as well.  Also, look up your local SB chapter, they will have so many resources available for you.  Good luck, I hope you find some experienced moms to help you thru the transition.
    TTC with Endo-DX-10 yrs ago
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  • I can totally relate in many ways to what you are going through right now.  Our DD was diagnosed with Hydrocephalus at the same ultrasound and there was a lot of worry, etc.  I do know that in our situation the outcome was so much better than the perinatologist made it out to be.  I wish someone would have told me that it's difficult to see exactly what is happening on ultrasounds...again, that is in our situation.  If you need a second opinion, get one! 

     

    Also, there is a woman I follow on facebook who has a son with Spina Bifida and she is amazing and her son is adorable!  I'm sure it would help to follow her as well.  https://www.facebook.com/pages/Baby-Elijah-James/186118091409289?fref=ts

     

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  • Have you looked into the Center for Fetal Diagnosis & Treatment at Children's Hospital of Philadelphia? I noticed you're from Nebraska, so it's not close, but it's worth looking into.

    They perform fetal surgery on babies with spina bifida that often can give a much better long-term prognosis than leaving it untreated until after birth. The surgery is usually performed around 22-24 weeks gestation, so not too far from where you are  now. Not every mother is a candidate, generally the mother needs to be in good health, but i'm not sure of the specifics.

    Hope this information helps!

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