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Hi Jo ... I'm sorry to hear about your loss and about your friend's baby's diagnosis. She posed a very good question and one that anyone who has chosen to carry a baby who has been diagnosed with anencephaly surely has had to address.
My daughter was diagnosed with anencephaly in 2000. The initial diagnosis was when I was just under 11 weeks along and I lost her when I was 26 weeks pg after pre-term labor. At the time I lost her I was 6 mos pg and had been "showing" obviously since shortly after 2 mos. (Often anencephalic pgs "show" more and earlier due to a condition called polyhydramnious which is just excess fluid in utero because the baby can't swallow). Most of my friends and family knew my situation, but when I would run into or meet a new person and they would offer their congratulations I would first just say "Thank you" and then depending on how long I was going to be around this person or how many questions they would ask, I'd add "but, she been diagnosed with anencephaly and we're going to lose her at, or shortly after birth". Now, this wasn't necessarily to anyone that I met in a shopping line, BUT very often when either congratulated or asked about the sex or if we were excited? ... etc. I happen to be a person who has no problem with the truth, actually, I've got a problem not being poignantly frank sometimes, so, this worked for me. IF she is uncomfortable with that approach all she as to do is say a polite "Thank you" (to a congratulations) or my baby is due in _____ (to answer a question) etc. There is nothing to say that everyone needs all of the details.
If she tells them the truth, many people will ask further questions ... BUT many will also just say they are sorry and change the conversation. The way she handles it needs to depend on what that person means to her.
Also, just so you know, while there are differing degrees of it, anencephaly is always fatal. There are rare cases reported that lived for a while, but most either die at birth or live for only a few hours. Lately, it seems that we are hearing more and more of those that live on for days.
I want to let you know that there are other groups that your friend might want to check out. http://groups.msn.com/mourningmommies/home.msnw is a group for ALL women who have been affected by anencephaly and http://health.groups.yahoo.com/group/anencephalyblessingsfromabove/ which is a group specifically geared to those that chose to carry after receiving a diagnosis.
I am a member and manager at Mourning Mommies and a member at ABFA and would highly recommend both groups. You could join as well if you are looking for information. Both are made up of women that have been or are going through this and have a collective wealth of information and support to offer.
It is great that you are there to support this woman. I will keep both of you in my prayers as you go through this journey together. Once my doctor knew that I was definitely going to carry and wanted to be treated as a "normal" OB patient he said "this is going to be one of the toughest, but most rewarding things you will ever do" and he was right!
Jackie
In a message dated 9/25/04 6:45:30 AM Eastern Daylight Time, anencephaly@yahoogroups.com writes:
Message: 1
Date: Thu, 23 Sep 2004 06:42:21 -0000
From: "mrbumbons" <mrbumbons@...>
Subject: What to Say to Others??
First let me say that I am very sorry for all the losses and
heartaches shared here, and the personal stories have all touched me
deeply. Here is my dilemma, and I hope someone can help me soon. I
had a baby die at 19+ weeks 5 years ago, delivered him, mourned him,
and am now living again thanks to my family and my faith. I
received a call from my priest today regarding a young family in our
parrish who has just learned her child is ancephalic. They are new
to the parrish and know almost no one here. The priest asked me to
be a support for her. I spoke with her for the first time today,
and her plan is to carry the child as long as she can. Apparently
the degree to which this child is affected is such that the doctors
are certain the defect will be terminal, but whether before or after
birth is uncertain. She asked me a question that I just couldn't
answer, however, because her situation is slightly different than
mine...it was, "What do I say to people when I meet them and they
see I'm pregnant, but I know my outcome won't be a happy one?"
Please tell me your stories asap so I can offer your suggestions to
her. Meanwhile, I do plan to tell her about this support forum in
case she has internet access and can benefit from it.
Thanks for any help you can offer, and God bless you and your
special babies.
Jo
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