Anencephaly and organ donation

Anencephaly
#1

Has anyone else battled the legal system in regards to organ donation of anencephalic infants? I want my baby to have a purpose for being. Abortion is not an option for me.

#2

Hi Theresa,

I had wondered about donating my infants organs after
she died and was told that they wouldn’t use their
organs for fear that they were not completely normal.
This was way back in 1979. I don’t know how it is
viewed today.

I think that a lot of the issue is the fact that when
a baby is considered brain dead, a lot of times they
have only the brain steam keeping them alive and in
the case of our babies, the brain stem is all they are
born with. So to take their organs, they would have
to completely die.

I could be wrong in my understanding.

I never even saw my little girl, back in 1979, because
I was told if I did I would have never had another
baby. I know now that that was a big mistake. I wish
I would have held her and looked at every part of her,
for I certainly have never forgotten her. I think of
her almost everyday.

Hope this helps,
Karen A.
— Theresa417
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Has anyone else battled the legal system in regards
to organ donation of anencephalic infants? I want
my baby to have a purpose for being. Abortion is
not an option for me.

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#3

After your baby has passed I know if she is big enough they can use her heart valves & I am sure there are other things. I think it varies by state so you may want to ask your doctor.

poopsie anencephaly-cpt8564@lists.careplace.com wrote:

#4

I wanted to do the same thing. I asked my doctor and she said it could be done. my baby girl only was only 4lbs and I believe you have to be 5lbs to be a doner. you should ask your doc. for more info.

Theresa417 anencephaly-cpt8564@lists.careplace.com wrote:

#5

I am getting amnio done to see if my baby’s anencephaly was caused by a chromosone defect or not. I think if it’s just anencephaly they may be able to use the baby’s organs (which is our hope). When the condition is from a chromosone defect (like down’s syndrome) they won’t use the organs for fear of passing on a defective organ. You may want to talk to your OB. Mine didn’t know to much, but after we have our test done we should be one step closer to finding out it we can donate or not. if we can I plan on calling our hosptal’s transplant unit to try & get more information on the legalities.