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Dana Forum Newbie
Joined: April 19 2010 Location: Alabama
Online Status: Offline Posts: 40
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Posted: Aug 28 2012 at 8:33am | IP Logged
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Please pray for my friend's sister as she makes a decision regarding her unborn daughter with spina bifida. She must decide soon whether or not to have surgery performed in utero or wait until after her cesarean birth.
There have only been 200 of these surgeries performed in the US all with different outcomes for the baby including loosing the baby. The mother would have to be on bedrest for the rest of the pregnancy and she has 2 young daughters. Plus, even though there have been no maternal deaths yet that is a risk.
Her decision basically boils down to taking the risk now and potentially loosing the baby or her own life or just waiting and maybe one day she would consider "my child could have walked, etc. if I had done the surgery".
Right now the baby can move her arms and legs, but there are no guarantees as the spinal cord is exposed to the amniotic fluid and pulled on in the womb. The surgery also reduces the need for a shunt down to 50% where I believe it would be 80%, if I remember correctly.
You ladies are wonderful! Thanks!
__________________ Dana
wife to Andre and mother to dd (06/07), ds (12/08), dd (7/10), and ds (6/12)
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kingvozzo Forum All-Star
Joined: March 28 2005 Location: Maine
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Posted: Aug 28 2012 at 9:26am | IP Logged
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Praying! These decisions are so difficult! So many "what ifs!"
__________________ Noreen
Wife to Ed
Mom to 4 great kids and 10 sweet ones in Our Lady's arms
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guitarnan Forum Moderator
Joined: Feb 07 2005 Location: Maryland
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Posted: Aug 28 2012 at 10:42am | IP Logged
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I am praying!
__________________ Nancy in MD. Mom of ds (24) & dd (18); 31-year Navy wife, move coordinator and keeper of home fires. Writer and dance mom.
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Chris V Forum All-Star
Joined: Dec 03 2009 Location: Washington
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Posted: Aug 28 2012 at 11:00am | IP Logged
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Oh no. This is heart-wrenching to read. My sincerest prayers to her as she considers this most difficult decision. I will also pray for the doctors who are the care providers and are giving her the medical advice so necessary to make this decision (and to which they have the power to persuade). God be with her!
__________________ Chris
Happy Wife with my Happy Life
Mama to My Five Girls ('04~'07~'09~'11~'11)
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Mimip Forum All-Star
Joined: Feb 17 2009 Location: Florida
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Posted: Aug 28 2012 at 11:02am | IP Logged
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Dana,
My best friend from high school and college had that surgery done at Vanderbilt University 10 years ago and was one of the first 50 mothers to do it. She too had two little ones at home when they operated on little Annie when she was 22 weeks in utero. Her surgery was a wonderful success and Annie is a great and positive success story. Annie has braces and walks around very well with them on her feet. She has had some bladder issues but as for Spinal Bifida cases she has truly been blessed.
If you'd like to pm me, I would love to pass along her info to you to give to your friend. My friend has gone on to have 3 more children and works to help other special needs families.
Best of luck and I'll be praying for your friend.
__________________ In Christ,
Mimi
Wife of 16 years to Tom, Mom of DD'00, DD'02, '04(in heaven) DS'05, DS'08 and DS '12
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SeaStar Forum Moderator
Joined: Sept 16 2006
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Posted: Aug 28 2012 at 11:25am | IP Logged
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Praying! What a tough choice...praying that God will give them peace with their decision.
__________________ Melinda, mom to ds ('02) and dd ('04)
SQUILT Music Appreciation
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stellamaris Forum All-Star
Joined: Feb 26 2009 Location: Virginia
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Posted: Aug 28 2012 at 12:39pm | IP Logged
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Praying for this difficult decision through the intercession of St. Gerard Majella. Also, asking St. Luke to guide the surgeons and doctors who will perform the surgery, if she chooses that course.
Holy Spirit, give to this mother and father Your Wisdom and peace, that they may know that their decision has been made according to Your holy Will and that they may be able to rest with confidence in your guidance.
__________________ In Christ,
Caroline
Wife to dh 30+ yrs,ds's 83,85,89,dd's 91,95,ds's 01,01,02,grammy to 4
Flowing Streams
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Misty Forum Pro
Joined: May 29 2012
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Posted: Aug 28 2012 at 4:39pm | IP Logged
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So hard to decided. May God giver the family the peace in any decision they make with no regrets.
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Kathryn Forum All-Star
Joined: April 24 2009 Location: N/A
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Posted: Aug 29 2012 at 8:36pm | IP Logged
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A close friend just had this done 2 yrs ago and the baby is doing wonderfully. yes, very risky but obviously they wouldn't change a thing. Their daughter is doing wonderful and just started walking!!
__________________ Kathryn in TX
(dd 16, ds 15, dd 8, dd 5)
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kristinannie Forum All-Star
Joined: Jan 27 2011 Location: West Virginia
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Posted: Aug 29 2012 at 9:07pm | IP Logged
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Sending prayers!!!!
__________________ John Paul 8.5
Meredith Rose 7
Dominic Michael 4.5
Katherine Elizabeth 8 months
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3Giftsathome Forum Pro
Joined: Feb 03 2011 Location: Washington
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Posted: Aug 29 2012 at 10:45pm | IP Logged
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Oh my, sending many prayers as they make such a tough decision. Praying for peace in their hearts when a decision has been made.
__________________ Mary
Wife to my wonderful dh for 13 years
Mama to 4 gifts (dd '04, ds '06, ds '07, dd '13)
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Dana Forum Newbie
Joined: April 19 2010 Location: Alabama
Online Status: Offline Posts: 40
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Posted: Sept 01 2012 at 9:24pm | IP Logged
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Just the most recent update I have and I thought I would share:
"My sister's test results came back last Monday and her little girl will be born with spina bifida. The good news is that they think the lesion is at a lower level of her spinal cord which means she shouldn't have any problems with trunk control or her upper body. She will likely have difficulty walking and pottying. Please pray for clarity as they try to make the decision whether to have surgery during pregnancy or wait until after she is born. They are struggling with this decision. Also, the malformation at the base of the brain (brainstem) is significant, which could cause a host of other problems. Please pray for a miracle that the malformation is lessened by the next ultrasound. Thanks for all of the prayers!"
Also, I believe she is headed to Vanderbilt this week to determine whether or not she's even a candidate for the surgery.
__________________ Dana
wife to Andre and mother to dd (06/07), ds (12/08), dd (7/10), and ds (6/12)
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drmommy Forum Pro
Joined: Dec 14 2009 Location: California
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Posted: Sept 02 2012 at 8:17am | IP Logged
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I will be praying for her to the Holy Spirit for clarity in regards to the decision making. How sad for her to be struggling with this. May God send his peace to her. Bridget
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SusanJ Forum All-Star
Joined: May 25 2007 Location: New Jersey
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Posted: Sept 06 2012 at 12:11pm | IP Logged
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Prayers! My oldest has spina bifida. It is very severs physically, not severe mentally. He is almost eight so this surgery was much newer then and we didn't do it. Your friend is welcome to be in touch if she wants to talk to other moms who have been there. Just pm me for contact info. I'm not on the forum much these days but I get PMs in my e-mail.
__________________ Mom to Joseph-8, Margaret-6, William-4, Gregory-2, and new little one due 11/1
Life Together
[URL=http://thejohnstonkids.blogspot.com]The Kids' Blog[/UR
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