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  #1  
Old 05-16-2016, 06:05 PM
HRM's mom HRM's mom is offline
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Default Spina Bifida and heart issues .

Does anyone elses little one have spina bifida? We found out a few weeks ago that our baby has spina bifida. Friday I found out he has a heart issue, scoliosis, and a one vessel umbilical cord. My head is reeling. Tomorrow I have a fetal echocardogram to see how the heart looks. Any advice you may have would be great.
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Old 05-16-2016, 06:14 PM
Seun Seun is offline
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No advice, just couldn't read and run. I hope the echocardiogram goes well.
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  #3  
Old 05-16-2016, 06:49 PM
My3sons My3sons is offline
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I have no experience but I couldn't read and run
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Old 05-16-2016, 08:37 PM
~Isme~ ~Isme~ is offline
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No experience, but I'm so sorry you're dealing with that kind of stress.

How far along are you?
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  #5  
Old 05-16-2016, 09:11 PM
aschrimp aschrimp is offline
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Was this the ultrasound with a perinatologist, or was it a regular anatomy scan? They said dd #1 had a heart issue at her anatomy scan, but when we had the higher resolution ultrasound it ended up that her heart was fine. I do know that there is a HUGE range of severity with spina bifida - have they indicated how severe it is?

I'm so sorry - it's all got to be terrifying news.
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  #6  
Old 05-16-2016, 09:19 PM
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I am with Andrea, things can change depending on who's doing it. I had a fetal echo with Ben and, thankfully, he was fine but we had a lot of scares with him.

I hope you get some answers that make you better prepared for what's to come.
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Old 05-16-2016, 10:00 PM
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Well with the spina bifida we have been to the university of Michigan for a confirmation of diagnoses but on the heart issue am hoping to get more answers tomorrow. The u of m says the lesion level of the spina bifida is at t11 which is just under the ribs but my mfm says they believe it is lower at L4 or L3 which is better for mobility and such. I am currently 22 weeks we found out at our 19 week anatomy scan. There is a fetal surgery for spina bifida but because of the scoliosis and my diabetes we are not a candidate. Honestly I was really unsure of doing it anyway.
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  #8  
Old 05-17-2016, 08:34 AM
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Old 05-17-2016, 02:34 PM
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Old 05-18-2016, 05:46 PM
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Any update?
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  #11  
Old 05-18-2016, 09:40 PM
HRM's mom HRM's mom is offline
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Sorry long day yesterday. So it appears the baby has a double outlet right ventricle, which means both the pulmonary artery and the aorta both are connected to the right ventricle and nothing is connected to the left. He will have to have open heart surgery at some point. My poor baby. We are so worried.
~~~~~~~
Oh and my mfm just called to say he believes we should deliver at the university of Michigan and have all his surgeries there which is what we were leaning towards after yesterday anyway.
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Last edited by HRM's mom; 05-18-2016 at 09:42 PM. Reason: Automerged Doublepost by CDN
  #12  
Old 05-18-2016, 10:37 PM
randareena randareena is offline
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I think it's Caseysmom? Whose daughter
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Has spina bifida



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Her username is Ciles.
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Last edited by randareena; 05-18-2016 at 10:38 PM. Reason: Automerged Doublepost by CDN
  #13  
Old 05-18-2016, 10:49 PM
Veganmamma Veganmamma is offline
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My friend Jamie has two daughters with sb and three have special needs. I'm going to rep you her email address. She has a blog too. She is a very busy homeschooling Mama to 4 kids, but I know she will be an amazing support if you decide to reach out to her. She was in your same shoes when pregnant with her second child.

If you visit her blog and start at the beginning you can catch up on her life and how much she has learned along the way.
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Old 05-18-2016, 11:23 PM
ciles ciles is offline
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Quote:
Originally Posted by Veganmamma View Post
My friend Jamie has two daughters with sb and three have special needs. I'm going to rep you her email address. She has a blog too. She is a very busy homeschooling Mama to 4 kids, but I know she will be an amazing support if you decide to reach out to her. She was in your same shoes when pregnant with her second child.

If you visit her blog and start at the beginning you can catch up on her life and how much she has learned along the way.
jaime is awesome<3 we've been FB friends for years- the SB community is definitely a tight knit one.


If you need to talk- feel free to message me here and I'll tell you how to find me on FAcebook. My oldest Kasey has SB and is about to be 8. It sounds scary when you get the initial diagnosis and I won't lie and say its easy- but I wouldn't change a thing<3 She's amazing!
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  #15  
Old 05-19-2016, 03:43 AM
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