Rita, There have been many women who were born with spina bifida and who
have had successful pregnancies. I would say that your first step would be
to find a neurosurgeon experienced in spina bifida (there are a few in NC)
and have a good review of your condition at this time. That person can
then refer you to a OB who could work with you on your fertility issues.
Spina bifida does not include infertility as part of the condition, but may
require special attention during a pregnancy - kidneys, bladder, spine,
modified ambulation - Studies have been published and usually there are
presentation during the annual conference on the subject. SBAA may have a
position paper at this time, I am not sure. But they do have a great
Medical Advisory Board who are resources.
Duke has a Myelodysplasia clinic coordinator who could talk to you about
resources - Crista Walters 919 681-5456
Joanne


Joanne Mackey, RN, MSN, CPNP
Duke University Medical Center
Division of Medical Genetics
(919)681-1945

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"Rita Connelly
(Ed - husband)" To: sbaofnc@yahoogroups.com
<lacyrose@carolin cc:
a.rr.com> Subject: [SBAofNC] Spina Bifida
and Pregnancy
Sent by:
sbaofnc@yahoogrou
ps.com


08/20/2006 04:36
PM
Please respond to
sbaofnc






Hello all. I am new to the group. I have been researching for years
people with SB getting and being pregnant.

I went through infertility treatments with my husband about 6 years
ago. I had been doing inseminations when I started to get extreme
pain near my left ovary. My doctor thought laparoscopy was the next
step. Well, he did not do appropriate research into my disability
and aborted the laporoscopy in the middle of the procedure. I have a
very mild form of SB (paralyzed from the ankles to my toes), but
although appearing normal on the outside, my spine curves a bit
forward torward the end of my spine.

I have had infertility and pain ever since and have not heard of
anyone wanting to operate since. That is, until I moved to
Charlotte. I went to urgent care the other day with severe pain on
the left side and the doctor thought my doctor was crazy and that
they would just have to move me to an appropriate position to do the
surgery. He said he thinks I was never worked up enough.

This distresses me. Almost 12 years after having wanted to become
pregnant, I am finding this out now. We have successfully adopted a
little girl from China and we love her so very much. Adoption is my
life now, but I have never been able to close that book of my life
because I think I had a crappy doctor.

The only research I can find on the internet when I search Spina
Bifida and pregnancy is if you are pregnant and have a child with
Spina Bifida. This is driving me nuts.

I am looking for doctors with experience in SB and pregnancy as well
as perhaps others who have become pregnant.

I would greatly appreciate any information I can get.

Rita







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