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6. Any people who have had children (siblings, etc.) with some of the defects screened for who would like to share their experiences?




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This article is from the Pregnancy Screening FAQ, by Lynn Gazis-Sax (gazissax@netcom.com) with numerous contributions by others.

6. Any people who have had children (siblings, etc.) with some of the defects screened for who would like to share their experiences?

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From Trish Jalbert (tjalbert@best.com):

I cannot stress enough how I feel about eugenics. Some people find
it ironic- I am *very* pro-choice, but I am against aborting babies
if they have non-fatal birth defects. (Something like Tay Sachs is
different- what a horrid situation for baby and parents, and there's
no hope at all.) I look at it this way: if you wanted a child, it is
not responsible to abort just because there's a problem. Parents are
supposed to love unconditionally, and aborting your baby because you
don't like some aspect of them is certainly not unconditional. That
said, I know some people couldn't handle life with a child with a
disability. I struggle with how I feel about those folks. What I
want to say is: then maybe you shouldn't be parents at all, since
parenting isn't supposed to be easy. But I also want to be
compassionate. There is always the option of adoption- there is a
waiting list for DS babies! But I wouldn't want to be forced to have
a baby I didn't want, and that's why I'm pro-choice in the first
place. It's a hard call for me. I have only met one person since
Miranda was born who told me point-blank that she would have aborted.
I didn't particularly care for her before she told me this- she
wasn't very nice to Miranda, so I suppose I had guessed already. No
one has yet to tell me *I* should have aborted, thank goodness.
I think that it's critical that before a decision to abort is made
that the parents-to-be actually spend some time with parents and a
child with the particular disability. The unknown causes a lot of
fear, and I think people might find that there is less to worry about
than they would have supposed.
I wouldn't mind at all showing Miranda off. And I guess I already
have a bit of a personal crusade to educate everyone else about what
wonderful people people with Down Syndrome really are. Don't rely
just on the genetics counselor or what you have heard before- this is
YOUR CHILD. Spend some time, difficult though it may be, to make the
decision. My attitude is that we are all different anyway, and that
we would do well to accept each other a little better. This is this
first step to accepting that you can't totally program your child,
too. He or she is going to be who he or she is- not who you
necessarily dream about them becoming. Sure I wish that Miranda had
only 46 chromosomes. But she doesn't, and just because one of us
gave her a little extra doesn't mean that we love her a little less.
I am already in these 3 short months a much better person than I was
before.

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Anonymous response 2:

My friend's nephew was born with the condition Trisomy 13 which they
detected a few months before his birth. This condition is almost 100
per cent fatal and my friends brother and sister-in-law were, of
course, extremely saddened by the news. Yet they were glad to have
the fore-warning and when the time came for him to be born they were
as prepared as they could be for his death. Sadly, he lived only an
hour. They are still recovering from his death but I do not sense in
any way that they regret knowing ahead of time that he would be born
with this condition. It seemed to help them prepare for their altered
reality.

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Anonymous response 6:

My son was born premature (at 32 weeks) and was diagnosed with a
profound hearing loss before he left the NICU, but of course, none of
this is actually screened for. I *do* think, to this day, that that
AFP result was *some* indicator of problems to come. I'll never know
that for sure, since the ultrasounds seemed to suggest a false
positive, and he did not have spina bifida or anything like that.
But, in my heart, I believe there is some connection.

-----------------------------------------
From Dena Rollo:

My mother's first child was born with multiple birth defects, and died
when she was two, before my older sister or I was born. An abortion
would have been much easier for my mother to deal with than was
Kathy's birth and subsequent death, but prenatal testing was unavailable
45 years ago. I have worked extensively with retarded children and
adolescents (many of them with Down's) and don't for a minute doubt
that living with and loving children like these can be a wonderful
experience for the child and for the rest of the family. But it
should be the family's decision, in my opinion.
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previous page: 5. If you got bad news on a prenatal test, how did you respond? How did you go about deciding what to do about these results?
  
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next page: 7. Any people who have one of the disabilities in question who would like to share their experiences?