photo by Nell Mednick

About Survivor Mom

I am the surviving, 75 year-old mother of Peter Weisman who died of Duchenne muscular dystrophy in 1980. I wrote a book called Intensive Care: A Family Love Story about the experience. The book is about how a family struggles and often thrives, even under the constant threat of death. This blog is my cyber-sequel. From a survivor's vantage point, I'm going to blog, in honest detail, about how life was then, and how it is now. Expect to feel better.

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Would you abort?

Sep 07, 2013

If you were contemplating getting pregnant again, would you want to take advantage of prenatal testing to learn if your fetus was male and had DMD? 

Such a test can be performed at about 10 weeks of pregnancy and involves a 1% risk of miscarriage.  And if you did decide to take that test, how would you respond if you learned that the fetus you were carrying had DMD? Would you choose to abort? Have you ever been faced with this decision?

I would like to invite the mothers and fathers of boys with DMD to enter into a conversation on this very tender, very controversial subject.

There is, at least in my opinion, no “right” answer to this question. I am asking the question because I think parents of sons with DMD have a lot of valuable thoughts and opinions to share with one another on that subject. To insure anonymity, please send your responses to me at my email address. I’ll then post them on my next “Survivor Mom” blog, deleting all references to your names and email addresses, unless, of course, you choose to be identified.

I would anticipate that religious beliefs influence some parents’ choices; others may believe that it is unfair to bring a child into the world who will, at least until a cure is found, suffer and die prematurely. Some may believe that there is sufficient joy in the shortened life of a child with DMD to bring another such child into the world. Others may not think they have the emotional or financial capacity to care for another child with DMD. The above are only a few of the points of view that I can imagine. No doubt there are more.

One thing is for sure. None of us who already has a child with DMD or who has lost a child to DMD would ever wish we had not had that child to raise and to love. I am not suggesting that any of us would trade that extraordinary experience.

My question is directed to the future, not to the past. Knowing that a test exists that would allow you to avoid bringing another child with DMD into the world, would you take advantage of that test?

Please share your thoughts with me and with other mothers and fathers whose lives have been touched by DMD. Speak your hearts and minds freely. Thank you in advance for your candor and for sharing your thoughts with me and others like you who may be called upon to make this decision.