WEBVTT

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[sil.]

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It was a hunger.

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It was like a wave of desire that
came over me to have a child.

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And… And it’s still the
strongest hunger in my life.

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It just seemed like life was going pretty well at that time. You know,
I working in the mornings, coming home and taking care of my baby,

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and hearing pregnant again and so it was
exciting. Yeah, it was really exciting.

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When you carry a child, you’re always… until
that child is actually born into the world,

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there is some… you know, some
thought that there could be

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something that goes wrong.

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No one can guarantee you, you know,
that you’ll have a prefect baby.

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And umm… so that when we embark on pregnancy, we
embark on a journey that has some unknowns in it.

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There is a

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natural part of pregnancy for every woman
that is this lonely part of pregnancy

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umm… where she is

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umm… connected with this child and so
worried that this child will be okay.

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And nobody can give her that reassurance. So it’s a
very lonely part. Umm… So she will naturally look

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to anything for reassurance. Where it
comes from? I don’t… I don’t know?

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I guess, because we all know that
sometimes babies aren’t normal, you know.

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I mean, that’s… that’s the fact.
Sometimes they’re not normal.

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It’s one of those instances
that you’ll never ever forget.

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You know, you get a call at the office
and… and the obstetrician says, umm…

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you better come to the hospital, we have a problem,
you’re son is mongoloid. End of discussion.

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[sil.]

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The medical system doesn’t have a clue about the
true nature of disability. The medical system

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sees disability as a challenge
to cure, to fix, to alleviate.

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There’s a whole prenatal care package now
and a numerous tests that are available.

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And women and their partners are confronted during pregnancy now
with the decision of whether or not to have one of these tests.

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People have been sued for not… for hiding
this sort of information from somebody

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who then turns up a baby with a birth defect
and goes to an attorney. There is a tremendous

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industry behind prenatal
screening and prenatal testing.

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It’s an even more powerful
force, I think, than the sort of

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medical model piece that drives it.

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[music]

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All the reflexes that a woman normally has early in pregnancy
are… are changed by the existence of prenatal testing.

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[music]

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For all of time,

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women have had pregnancies and
deliver children mostly healthy.

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But 3 to 4% of all babies born

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on average are born with a major birth defect,
mental retardation or a genetic condition.

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Society has virtually no way

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and medicine has no means of achieving
better babies. For prenatal diagnosis,

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and the aspect, the genetic aspects of prenatal
diagnosis strive to do is to try and prevent

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major catastrophes or disasters,

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ah… in the sense of giving somebody
ample notice. Prenatal testing could be

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a source of information about a
child for the purposes of treatment

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during the pregnancy if that treatment were
available for the purpose of preparing families for

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ah… the challenges that they may face. Another
reason, I think, that has some legitimacy

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is that knowing that their baby is
free of a certain disease state

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or is healthy as far as we can tell them their
baby is healthy, has some real positive effects

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on their pregnancies.

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[music]

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Every woman in the United
States is offered an AFP test

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when she is pregnant. It may be helpful to start
calling in a maternal serum screening test,

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because we’ve gone beyond AFP now.
It’s offered some time

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between the 15th and the 17th
week or 18th week of pregnancy.

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It is a true screening test.
One uses screening test

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because they are relatively
cheap and relatively safe.

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And you don’t have a diagnostic
test that is either one,

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that is either real cheap or real
safe or both. The whole purpose of

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the screening is to recognize
or distinguish women

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whose risks appear to be
higher than background.

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To tell them their risks are higher and to offer
them additional tests. Because it’s a screening test

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it will not tell anything specific
about that developing fetus,

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it can only indicate which woman may or may not have a higher
chance of having a baby with some sort of a health problem.

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All we do is take a blood sample from the
woman, we look in the serum component

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of that sample. And we will
give back to the… to the…

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to a patient’s physician, a result that says that fetus
is at risk either for an open neural tube defect

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or for a chromosomal defect such as
Down syndrome. Open neural tube defects

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are things like Spina bifida is
the major one, Anencephaly –

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which is complete lack of… of the
brain being formed in the fetus.

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Those are very serious birth defects.
Down syndrome

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is having a particular faces,
being mentally retarded,

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having particular palmar creases,
having a particular blood profile.

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It is an entire syndrome of symptoms,

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and the genetic cause of which we know
to be having an extra Chromosome 21.

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A diagnostic test is something more or like amniocentesis,
which can tell with a… a great degree of certainty

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the genetic status of the developing baby.
Yes, well, amniocentesis is the procedure

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where a needle is introduced
through the abdominal skin

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into the… into the womb so that

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amniotic fluid can be extracted. The cells
will be analyzed for… for Down syndrome.

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That’s an easy diagnosis
for a standard karyotyping

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laboratory to make, and can be
made within a week, ten days,

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certainly two weeks from the time that you
had your procedure to getting results.

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That’s a definitive,
normal, abnormal result.

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So I felt like, \"With it available,
should we do it? Will I feel bad

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if god forbid something is wrong with the baby?\" And
I had the option of testing and chose not to do it.

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I don’t know. It didn’t present any problems. It
wasn’t invasive. You know, it’s a simple blood test.

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Hey, wait a minute! This is not just a
blood test. If it comes back normal,

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it’s just a blood test. If it comes
back abnormal, it’s… you know,

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it can be quite a bit more. I guess, I was not
aware that there was that testing and that ah…

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I guess, I felt like, you know, some means

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that doing that was encouraging
people to test and then abort.

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And ah… I have a very strong
feeling against abortion.

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I think at minimum you have to understand that
what you’re doing here is not some reassuring that

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\"we want to make sure your baby is all right testing\",
but you’re entering into a screening program to decide

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which people you think ought
to be brought into the world

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and which not, and what kind of a child you’re
prepared to mother with the understanding

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that you could make a careful rational decision that there’s
a particular kind of child you are not prepared to mother

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and the world may very well hand you that kind
of child anyway in spite of all the testing

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that there ever is. I was supposed to
leave for Europe on Friday for business.

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And I was out with my whole office
celebrating what a good year we were having.

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And I got pulled away from
the table by my secretary

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who said you’ve got a message to
call your doctor immediately.

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And I had my suitcases. I was on my way to the airport
from this restaurant. And my doctor said to me,

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your test results came back and the
F&P levels are low. You are now a one

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in 71% chance of having a
baby with Down’s. And it all…

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It hit me like someone had just knocked
me out. It was one of the worst feelings

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I’ve ever had. And I just… I felt like my world
was… was falling apart. And my doctor kept

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saying to me over the phone,
this doesn’t mean anything.

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It is a screening device. Understand all
you’ve done is your statists have changed.

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Probability thinking in that
sense seems alien to people,

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ah… at least when you talk
about it in… in the terms of…

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of those words or the numbers
that go along with it and yet

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making judgments on probabilities
is something all of us do everyday

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many, many times a day. And I said, well, you
just told me I went from one in 2,000 to one

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in 71 and then I should not be
overly concerned about that.

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I said, may be you’re not overly concerned but I
am. This is something that’s living inside of me.

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If we didn’t have the technology it wouldn’t even
be an issue. You’ve… You’ve created that anxiety by

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offering the test. You
know, we’re obligated

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to offer this screening test so we
offer this test. So we… In some ways

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I feel like we’ve created the anxiety.
Furthermore, if the results

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of the maternal serum screening
testing are reassuring,

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that certainly does not reassure
anybody about the absence

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of any other birth defect or malformation.
It’s not that everything is fine.

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That baby does not have those conditions for which you’ve
been looking. That’s it. You cannot say any more about that.

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Your only choice if you want further diagnostic
information is to have an amniocentesis.

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Peoples choices about genetic testing

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can’t be predicted. You can’t
walk into an exam room

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and look at a couple and think, well, based on
their, you know, education or their religion

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or their income, I can make a reasonable
prediction of what they will pick.

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It starts out by something completely
different, that’s what I call their world view.

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Well, there is no question about the
fact ah… that a little knowledge is best

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and the more knowledge… you know, the more knowledge you… you
have the better off you are. Yeah, I think… I think the more

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definite knowledge you have,
you know, the better equipped

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you are to make a decision, I mean,
in… in any instance. I feel like

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the knowledge is difficult no matter what it’s easier
with a baby there to love and hold and care about.

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There is all sorts of
misinformation disguising under

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the name of knowledge and… and the chance
particularly for a non-scientist to feel that

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she is getting the right information
is very, very difficult. It’s a very

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ambiguous kind of information the woman gets. You
know, I… I see a tall dark stranger in your future,

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but ah… they can’t really tell the woman
the information that she would need

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to make the kind of choice that she would be comfortable
with. I don’t think we need more information. I think that

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we’ve got more than we need. And most of it
is based on fear. If… If all this technology

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came about because we wanted
to save lives in a loving,

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healthy, happy way, I’ll be all for
it, and sometimes it does that.

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But I really believe it’s fear-based. And I
believe the more you involve yourself with that,

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you’re giving yourself over to a philosophy

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that I don’t buy. You know, man is
wrestling for control with God and I…

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I think scientifically we’ve reached a point
of technology where we’re into some areas

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where we actually are
beginning to gain some turf.

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And I… I’m not sure that’s right, you
know, because we don’t… we don’t have…

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we don’t have the more… I think our society
no longer has the maturity morally

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and spiritually to deal with those things.
And I almost wonder if we did,

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we wouldn’t, because we’d realize that’s
God’s territory. Let him have it.

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I would be insulted if they did not give
us the opportunity to have this test,

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because they’re just saying,
you know, we’re… we’re ah…

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we’ll do… we’ll do that’s best for you. You
know, we won’t… And… And in the meantime,

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we’ll also make you follow along with what we think is
morally right. What I’m not willing to do is to say

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that everybody has to have that knowledge,
that that’s necessary for us to… to… ah…

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to help you have a baby, because I don’t think it
is for a lot of people. I think it’s unhelpful.

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I think that along with
the right to know ah…

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is the right not to know. And I think that… that
patients, mothers, parents are very much entitled

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to ah… take that perspective.

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Pregnancy is a developmental
event, it’s a life event.

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And any ah… developmental
life event carries

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with a decision making. Many
people come to pregnancy

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not having well-honed
decision making skills.

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So what we try to do is get a perspective on how
they… how would this information means to them.

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We also want to at least attempt to
have them integrate the information

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so that their decision process can be articulated
for them and also that they feel comfortable

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going ahead with testing or not testing.
So a lot of what we end up doing is

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first of all getting the couples talk to each
other. Sometimes they have not addressed

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what they would consider doing if they found
that their fetus had some type of problem.

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So, we often engage them in that kind
of discussion. From the very beginning

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I was never sure what I would do if I ever
found out the baby had an abnormality.

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Ah… I just never really thought about it.
I… I thought, I’ll cross that bridge

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when I come to it. It probably isn’t going to happen. And
I remember going in the hospital and going downstairs

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to this office, and fairly young woman,
who brought out, and to this day this…

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for some reason these little
pictures of the genes

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give me the creeps. Somehow to see a human
being like that, I don’t… it was very creepy.

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Pregnancy is a really lousy time to give people
information about their genetic risk for anything.

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Some couples choose to go ahead with amniocentesis, some
do not. But the whole process of genetic counseling

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and our basic tenet is non-directive
counseling. Being non-directive,

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I think, umm… involves having
implicit faith in a couple’s ability

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to make the decision that’s right for them.
And that your perspective

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as the counselor umm…
is somewhat irrelevant,

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because you can’t possibly put
yourself in that person’s shoes.

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So, from about 1976,

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it became accepted. Since the
safety of amniocentesis was then

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definitively shown to routinely

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and systematically tell women
who are 35 years or more

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that their risks were increased for
having a child with a chromosome defect

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and that amniocentesis was recommended.
So like to me there should be an option

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that every woman should be able to have not just
because she’s older, because you never know

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what’s… you know, what’s going on inside your body.
Just because you’re young it don’t mean that it’s…

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it’s 100% guaranteed that nothing is going
wrong. And I tell you I was harassed by people.

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There wasn’t a person it seems that I met that
didn’t say did you have amniocentesis? Like did you…

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eat your (inaudible) today, you know.
Like it was just automatic.

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I know about it. I had heard of people that
had had the test. And I thought, well,

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what harm can a prenatal test do if it can
give you some very valuable information?

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I really did hard information. I found
out at that point that the risk of

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amnio complication was
exactly the same as the risk

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of a Down syndrome baby. Approximately
one in 200 women miscarry as a result

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of the amniocentesis procedure. That’s, of course, not an
accident that those numbers are very close to one another,

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one in a couple hundred to one in a couple
hundred. That they’re about the same

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is not an accident. At which point
it became a very dramatic decision.

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Did I want the risk of
another amnio complication

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which had been enormously complicated
or the risk of a… of a Down’s baby?

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Pregnancy is a terrible time to have to…
to begin to learn about disability.

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Umm… And unfortunately that’s how

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many women are having to learn for the first
time about their own values and attitudes

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about the possibility of having a child
with a disability. She started to explain

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this chrom… one extra chromosome
causes Down syndrome, and at your age

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and you should be tested. And if we find out
you have a child with Down syndrome or,

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you know, the… the test is positive
then you can have an abortion so that,

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you know, with no extra money and you’ll be
treated just like a regular patient and you’ll…

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And she went on and on and on what they would do for me if
I had, you know, with the assumption I have an abortion.

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This was counseling. And I
said, \"What if I decided

00:18:45.000 --> 00:18:49.999
I didn’t want to have an abortion?\" If one chooses
not to have a prenatal test there are a whole range

00:18:50.000 --> 00:18:54.999
of things that occur. I think that will make them feel very pure
about that decision but there are going to be a lot of outside

00:18:55.000 --> 00:18:59.999
ah… influences on her that may
tamper her feelings of joy.

00:19:00.000 --> 00:19:04.999
Ah… There may be umm…
friends or parents who say,

00:19:05.000 --> 00:19:09.999
how can you possibly not have that test?
Or if a child is born with a disability,

00:19:10.000 --> 00:19:14.999
who… blame the disability or the challenge on the
mother, you’ve brought a child into the world

00:19:15.000 --> 00:19:19.999
who is… has a disability. How could
you’ve done that? And she said,

00:19:20.000 --> 00:19:24.999
\"How would you like to have Down
syndrome?\" And it was like,

00:19:25.000 --> 00:19:29.999
okay, it was like just the idea of it.
Now I wish I’d said, \"Well,

00:19:30.000 --> 00:19:34.999
how do you know how it feels to have Down syndrome?
And have you ever met anyone with Down syndrome?\"

00:19:35.000 --> 00:19:39.999
You know I hadn’t, but it didn’t seem like the horrible
thing they were in the world to me. I would have liked

00:19:40.000 --> 00:19:44.999
to have been the kind of person who could
have welcomed a Down syndrome baby.

00:19:45.000 --> 00:19:49.999
The reality of what I’ve
seen of what kind of care

00:19:50.000 --> 00:19:54.999
that entails puts a terrible
burden on marriages

00:19:55.000 --> 00:19:59.999
and on older siblings. And I think
people feel so guilty about that

00:20:00.000 --> 00:20:04.999
that they’re not always willing to talk about
it. The fact that people might make choices

00:20:05.000 --> 00:20:09.999
about averting the birth or
avoiding the birth of a child

00:20:10.000 --> 00:20:14.999
who could be predicted to have these defects
should not, and in my view does not,

00:20:15.000 --> 00:20:19.999
in any way prejudice an
individual’s view and sensitivity

00:20:20.000 --> 00:20:24.999
of the handicapped. When I was going
in for my second amniocentesis

00:20:25.000 --> 00:20:29.999
and I was just terrified. I happened to,
in the waiting room of the hospital,

00:20:30.000 --> 00:20:34.999
meet an older woman whom I love very much,
she’s in her late 70s and so a way these woman

00:20:35.000 --> 00:20:39.999
who has lived very well and very fully.
And she always seems to arrive

00:20:40.000 --> 00:20:44.999
at the moment that I most need her. And I was
going into the room, and I was really scared,

00:20:45.000 --> 00:20:49.999
and I was crying. And she
said… she put me in her…

00:20:50.000 --> 00:20:54.999
took me in her arms and she looked at me and
she said, \"You must do it. You must always act

00:20:55.000 --> 00:20:59.999
in favor of less rather than greater
suffering.\" Amnio is very expensive.

00:21:00.000 --> 00:21:04.999
It’s, you know, about a $1,000 a test.

00:21:05.000 --> 00:21:09.999
The ultrasounds are expensive
and just the prenatal care,

00:21:10.000 --> 00:21:14.999
you know. That… That’s difficult for a family
that can’t… that doesn’t have health insurance,

00:21:15.000 --> 00:21:19.999
I can’t afford it or whatever. I think women are
afraid of the test. I think the fact that they are

00:21:20.000 --> 00:21:24.999
inserting a needle into your pregnant
stomach kind of turns people off.

00:21:25.000 --> 00:21:29.999
I think worse was waiting for the results.

00:21:30.000 --> 00:21:34.999
And then I had three weeks
to wait for those results.

00:21:35.000 --> 00:21:39.999
Well in that time, there
was my time to deal with,

00:21:40.000 --> 00:21:44.999
what I felt was, the realization that I had something
wrong with my child, and how I was going to handle that,

00:21:45.000 --> 00:21:49.999
and how I would handle terminating the
pregnancy. You know, I… that’s what I did

00:21:50.000 --> 00:21:54.999
over that three-week period was deal with
the outcome. And I never really thought

00:21:55.000 --> 00:21:59.999
much about what if this child was okay. I spent three
weeks thinking about if this child is not okay

00:22:00.000 --> 00:22:04.999
I will have to terminate this pregnancy and I will
have to live with that. Waiting for the results

00:22:05.000 --> 00:22:09.999
puts the woman in a funny kind of social
position in which she is pregnant

00:22:10.000 --> 00:22:14.999
but not necessarily having a baby.
Ah… A woman in a pregnancy

00:22:15.000 --> 00:22:19.999
that she’s accepted or chosen, umm…
but who may not be having a baby,

00:22:20.000 --> 00:22:24.999
umm… the expression that I
found coming to me around

00:22:25.000 --> 00:22:29.999
this was the notion of a tentative pregnancy. The
woman is pregnant but not necessarily having a baby,

00:22:30.000 --> 00:22:34.999
she may be having an abortion.
When do couples make a…

00:22:35.000 --> 00:22:39.999
or a woman who is pregnant make a
commitment to being a parent of this child?

00:22:40.000 --> 00:22:44.999
Does that happen at conception? Does that happen when
the results of the prenatal tests are available?

00:22:45.000 --> 00:22:49.999
Does it happen when viability
of the fetus occurs?

00:22:50.000 --> 00:22:54.999
What is the point in pregnancy when… when
parents are unconditionally committed

00:22:55.000 --> 00:22:59.999
to… to ah… this child? And I
think that the problem with…

00:23:00.000 --> 00:23:04.999
with the option of terminating a
pregnancy on the basis of a disability

00:23:05.000 --> 00:23:09.999
is that it postpones that commitment. I was panicking. I
was saying to John, I’m going to feel this baby move.

00:23:10.000 --> 00:23:14.999
And when I feel this baby
move everything changes. Ah…

00:23:15.000 --> 00:23:19.999
And that was a big problem for me, the… the
idea of that I would start feeling life.

00:23:20.000 --> 00:23:24.999
Mothers will find themselves
momentarily more anxious

00:23:25.000 --> 00:23:29.999
awaiting the results of
the amniocentesis test.

00:23:30.000 --> 00:23:34.999
Ninety-six percent at least are
going to be reassured not only

00:23:35.000 --> 00:23:39.999
ah… that the results is normal but
their risks now are even lower

00:23:40.000 --> 00:23:44.999
than they would ever have possibly be,
and they have the reassurance that

00:23:45.000 --> 00:23:49.999
serious disorders have been excluded.
So, yes, there may

00:23:50.000 --> 00:23:54.999
well be some anxieties, but
when ultimately one compares

00:23:55.000 --> 00:23:59.999
these minor anxieties to the
literal chaos of a lifetime

00:24:00.000 --> 00:24:04.999
that results from the absence of such
testing or the opportunity of such testing

00:24:05.000 --> 00:24:09.999
and life for the child with serious handicap
thereafter, there are no comparisons

00:24:10.000 --> 00:24:14.999
whether you admit it. One of the
things that troubles me is that

00:24:15.000 --> 00:24:19.999
the phrase that medical
people have hooked on to

00:24:20.000 --> 00:24:24.999
for defining women’s experiences
with this testing is anxiety.

00:24:25.000 --> 00:24:29.999
That’s the word you use for a math test. Ah… It’s
a trivializing expression. When you talk about

00:24:30.000 --> 00:24:34.999
Supreme Court judges or effaces or
whatever making decisions about

00:24:35.000 --> 00:24:39.999
abortion and the meaning of life and obligations
of individuals to other individuals etcetera,

00:24:40.000 --> 00:24:44.999
these are the great moral issues of our time.
When women are wrestling with the same decisions

00:24:45.000 --> 00:24:49.999
in a very personal and immediate way with…
with… within their own bellies and bodies,

00:24:50.000 --> 00:24:54.999
what they’re experiencing is anxiety.
So, part of it is just trivializes

00:24:55.000 --> 00:24:59.999
the experience women have in relationship
to the test. It was very difficult for me,

00:25:00.000 --> 00:25:04.999
because here I was knowing that I would terminate
the pregnancy if… if the baby was Down’s.

00:25:05.000 --> 00:25:09.999
And I was working with someone who had a Down’s.
I then… And I felt that I was making a statement

00:25:10.000 --> 00:25:14.999
on his life and on his child. I was upset with my
feelings. I would say may be I’m not a good person

00:25:15.000 --> 00:25:19.999
because I won’t keep this baby. And…
And out of the kindness it was hard.

00:25:20.000 --> 00:25:24.999
He wanted to invite us over to get to know how
wonderful his daughter was and… Doing this.

00:25:25.000 --> 00:25:29.999
And… And it was very difficult. One of my biggest
fear was I was going to get this phone call

00:25:30.000 --> 00:25:34.999
and I knew I was going to get. And was
going to be all by myself with my babies

00:25:35.000 --> 00:25:39.999
and I was going to have to hear this news all by myself.
And I kept threading it. So I was all excited about it

00:25:40.000 --> 00:25:44.999
until they called me with the results.

00:25:45.000 --> 00:25:49.999
Tim walked back in the
house and I was sitting

00:25:50.000 --> 00:25:54.999
down tying my sneakers
looking at Sesame Street.

00:25:55.000 --> 00:25:59.999
And they had a group of kids throwing
a ball. And they… As I looked up,

00:26:00.000 --> 00:26:04.999
they focused on this one little girl with Down
syndrome. And I can remember looking at her thinking,

00:26:05.000 --> 00:26:09.999
she’s really… she looks great. That would
be fine. I wouldn’t mind that at all.

00:26:10.000 --> 00:26:14.999
I can remember that clearly thinking that. And I finished tying
my sneakers, and I stood up, and you walked in the door,

00:26:15.000 --> 00:26:19.999
and the phone rang, and it was the doctor. The minute I
picked up the phone, she didn’t even say anything else

00:26:20.000 --> 00:26:24.999
except I have great news for you. And
so immediately I felt good. I mean,

00:26:25.000 --> 00:26:29.999
I remember I broke down in my office the… the
minute she told me. And then I felt really great.

00:26:30.000 --> 00:26:34.999
You know, it’s like everything that I was doing was worth
it and he was going to be fine. You know, I… I can remember

00:26:35.000 --> 00:26:39.999
when I got the phone call thinking, you know, things like
this don’t happen to me that happens to other people.

00:26:40.000 --> 00:26:44.999
And then you through, why me? You know, I’ve
been a pretty good person my whole life.

00:26:45.000 --> 00:26:49.999
Why is this happening to me? And then, of course,
you’re faced with what are we going to do?

00:26:50.000 --> 00:26:54.999
How are we going to encounter this conflict
that we suddenly have presented to us?

00:26:55.000 --> 00:26:59.999
They said we have a terrible news for you.
Umm… Your… Your results came back.

00:27:00.000 --> 00:27:04.999
Umm… But they didn’t come back positive,
they came back with the child,

00:27:05.000 --> 00:27:09.999
you have Down syndrome. And I said, \"Does
that mean definite?\" And he said, \"Yes!\"

00:27:10.000 --> 00:27:14.999
And then I can remember
umm… not saying anything.

00:27:15.000 --> 00:27:19.999
I can remember him saying, \"Are you still there? Are you okay?\"
I think he asked me if I was alone before he told me the news.

00:27:20.000 --> 00:27:24.999
And then you were saying, what’s the matter? I started
telling you. And then you talked to the doctor.

00:27:25.000 --> 00:27:29.999
And then I can remember
umm… I can remember Colin,

00:27:30.000 --> 00:27:34.999
who was not yet two saying, \"Mummy is
crying. Mummy, mummy what’s the matter?\"

00:27:35.000 --> 00:27:39.999
He says, it’s… it’s not… don’t
blame yourself. It’s not something

00:27:40.000 --> 00:27:44.999
that you could have done yourself by
yourself. And I asked him to redo the amnio,

00:27:45.000 --> 00:27:49.999
because I just felt, what if somebody made a mistake? You know,
here I’m… I’m possibly going to terminate this pregnancy

00:27:50.000 --> 00:27:54.999
and… and the baby could be perfectly normal. I
was just afraid of some kind of human error

00:27:55.000 --> 00:27:59.999
or some kind of what…
whatever they do something

00:28:00.000 --> 00:28:04.999
went bad or whatever. So I asked him to repeat
the test, which he was very agreeable to do.

00:28:05.000 --> 00:28:09.999
So he said it’s… you know,
it’s up to you whether,

00:28:10.000 --> 00:28:14.999
you know, you have to decide whether you want
to continue with the pregnancy or terminate.

00:28:15.000 --> 00:28:19.999
So that was a… that was a heavy
weight, you know, in my shoulder.

00:28:20.000 --> 00:28:24.999
Then I had to think about it. I think he should have said
to us you can continue the pregnancy and keep the baby,

00:28:25.000 --> 00:28:29.999
you can terminate the pregnancy or
you can keep the baby, have the baby

00:28:30.000 --> 00:28:34.999
and give the baby up for adoption. I did not know at the
time, and I think probably most people out there don’t know,

00:28:35.000 --> 00:28:39.999
there was a waiting list to adopt babies with Down
syndrome. I called my parents and I remember saying

00:28:40.000 --> 00:28:44.999
to my father saying, you know, tell mom,

00:28:45.000 --> 00:28:49.999
I told him. And I said, tell mom we’re
having this baby and I don’t want her to…

00:28:50.000 --> 00:28:54.999
I don’t want to hear anything else about anything or
having this baby. We wanted to now make sure that

00:28:55.000 --> 00:28:59.999
we had uncovered every stone about Down
syndrome so that we could make a decision that…

00:29:00.000 --> 00:29:04.999
that I mean, if we had decided to terminate then we could
say we terminated because… and we would have a… a…

00:29:05.000 --> 00:29:09.999
a valid accurate list of reasons why we terminated.
If we said we’re going to keep this baby,

00:29:10.000 --> 00:29:14.999
we’re going to have this baby because there would
have been that, you know, that same list of…

00:29:15.000 --> 00:29:19.999
of accurate, valid, up-to-date. You know, we
found a lot of outdated information up there…

00:29:20.000 --> 00:29:24.999
out there. They had a few books on Down syndrome, but they
were all glorified books. You know, to me they were glorified.

00:29:25.000 --> 00:29:29.999
They… They always show… They
were showing all the positive,

00:29:30.000 --> 00:29:34.999
a cute little child, umm… one that’s
umm… you can tell that that child

00:29:35.000 --> 00:29:39.999
wasn’t slow in learning. Umm… You
know, it was always the better side.

00:29:40.000 --> 00:29:44.999
It was never the other which,
to me, they should have both,

00:29:45.000 --> 00:29:49.999
because there was the decision that you had to make
yourself, you know. They told us we could terminate,

00:29:50.000 --> 00:29:54.999
you know, 20-22 weeks, would be stretching it.
So we approximately had two to three weeks

00:29:55.000 --> 00:29:59.999
to make the decision.

00:30:00.000 --> 00:30:04.999
Nobody really wants to talk about abortion
with a pregnant woman who’s leaving booties.

00:30:05.000 --> 00:30:09.999
And for a lot of reasons nobody wants to talk about what
this test is really about, these tests are really about.

00:30:10.000 --> 00:30:14.999
There’s almost nothing that they’re testing
for that they can do anything about

00:30:15.000 --> 00:30:19.999
umm… except than the pregnancy. One of the
essential components of genetic counseling

00:30:20.000 --> 00:30:24.999
is the ah… opportunity to provide
a pregnant woman with choice,

00:30:25.000 --> 00:30:29.999
ah… the choice of… of not continuing

00:30:30.000 --> 00:30:34.999
a pregnancy ah… that’s at
risk ah… by ah… termination

00:30:35.000 --> 00:30:39.999
or ah… and a termination
which then would enable

00:30:40.000 --> 00:30:44.999
this woman to go on and have
a… a subsequent pregnancy

00:30:45.000 --> 00:30:49.999
which would hopefully result in a fetus
which would not have a… a problem.

00:30:50.000 --> 00:30:54.999
And I think this is ah…

00:30:55.000 --> 00:30:59.999
absolutely integral to the whole field
of medical genetics. I think without

00:31:00.000 --> 00:31:04.999
the option of selective abortion
relatively easy and relatively inexpensive

00:31:05.000 --> 00:31:09.999
that you would not see the
activity in prenatal diagnosis

00:31:10.000 --> 00:31:14.999
that you see, you’d see it as a much more
slowly developing field. Any woman who’s ever

00:31:15.000 --> 00:31:19.999
felt herself possibly pregnant when she
didn’t want to be, who’s ever had this,

00:31:20.000 --> 00:31:24.999
oh please make this go away, make this not
happen, knows that an abortion to get unpregnant

00:31:25.000 --> 00:31:29.999
is not an abortion that’s
focused on the idea of a baby,

00:31:30.000 --> 00:31:34.999
it’s focused on give me my body back, give me
my period back, get me out of this mess. Umm…

00:31:35.000 --> 00:31:39.999
These are not abortions like that. These are
abortions in which what the woman is confronting

00:31:40.000 --> 00:31:44.999
is very much the idea of a baby. This
baby would be born with whatever

00:31:45.000 --> 00:31:49.999
higgledy-piggledy disease, is higgledy-piggledy
disease such a terrible thing

00:31:50.000 --> 00:31:54.999
that my child would be better off
not being born than being born

00:31:55.000 --> 00:31:59.999
with that condition? That’s a very
different kind of abortion issue

00:32:00.000 --> 00:32:04.999
than getting unpregnant. It… It puts
the woman in the position of a mother

00:32:05.000 --> 00:32:09.999
advocating for the child about
whether it’s worth living or not.

00:32:10.000 --> 00:32:14.999
So I think that it’s umm… it brings up
so many questions about what is it…

00:32:15.000 --> 00:32:19.999
what’s with our society that we can’t tolerate
differences? I think it’s enormously ironic

00:32:20.000 --> 00:32:24.999
that at this point in history when we are
integrating people with disabilities

00:32:25.000 --> 00:32:29.999
so much more successfully into society and
we’re beginning to appreciate the values

00:32:30.000 --> 00:32:34.999
in the life of somebody with Down syndrome or life of somebody
with a physical disability that they can be contributing

00:32:35.000 --> 00:32:39.999
in reaching members of society, it’s
so ironic that at this point in time

00:32:40.000 --> 00:32:44.999
the technology has evolved and is being offered
to individuals with the implicit assumption

00:32:45.000 --> 00:32:49.999
that the technology will be used to
eradicate people with disabilities.

00:32:50.000 --> 00:32:54.999
I certainly don’t believe that people
have or should have ah… a poor view

00:32:55.000 --> 00:32:59.999
of the disabled just because they
believe that women and couples

00:33:00.000 --> 00:33:04.999
have a right to make a choice in not
having a child with serious disability.

00:33:05.000 --> 00:33:09.999
And one of the most important
aspects of this is the failure

00:33:10.000 --> 00:33:14.999
to recognize that many people
with disabilities suffer

00:33:15.000 --> 00:33:19.999
and have pain and have repeated surgery. I
just… I said, I can’t… I can’t do that.

00:33:20.000 --> 00:33:24.999
I can’t… I can’t bring a child into the world
like this. I mean, not knowing what degree

00:33:25.000 --> 00:33:29.999
and then majority of degree is on the lower end.
That’s not a life for this child at all, you know.

00:33:30.000 --> 00:33:34.999
So much… There’s enough bad things in this world,
enough prejudice in this world than to bring a child

00:33:35.000 --> 00:33:39.999
in this world that that could
on this lower end, which to me

00:33:40.000 --> 00:33:44.999
is where he would have been, because there was
too many on that end, you know. The odds were,

00:33:45.000 --> 00:33:49.999
he was going to be on that end. So
often the argument is used that

00:33:50.000 --> 00:33:54.999
the child would suffer, that we have
to prevent the suffering of this child

00:33:55.000 --> 00:33:59.999
who would be born with a… with
a terrible painful death,

00:34:00.000 --> 00:34:04.999
you know, would face a terrible painful
death. I don’t believe it. I don’t believe

00:34:05.000 --> 00:34:09.999
that an infant would choose
to die the way an adult

00:34:10.000 --> 00:34:14.999
who’s lived their whole life might choose to die at the
end of their life. You know, it’s hard to kind of admit

00:34:15.000 --> 00:34:19.999
that you don’t want the burden of raising a child who
has problems, but I guess that’s really the bottom line

00:34:20.000 --> 00:34:24.999
given that I work full-time and was
intending to continue to work full-time,

00:34:25.000 --> 00:34:29.999
given that financial resources necessary to
be able to support a child with problems

00:34:30.000 --> 00:34:34.999
and the strain on a marriage that was new.
We have to be honest

00:34:35.000 --> 00:34:39.999
that what we’re doing is using a triage. We’re
saying, this baby is going to take more resources

00:34:40.000 --> 00:34:44.999
or is going to cause us more
pain than we can handle.

00:34:45.000 --> 00:34:49.999
And if we’re honest about
that then the resor…

00:34:50.000 --> 00:34:54.999
the resource of abortion ah…

00:34:55.000 --> 00:34:59.999
gets put in a different context. I think
it has a whole different meaning.

00:35:00.000 --> 00:35:04.999
She told us that

00:35:05.000 --> 00:35:09.999
we had… you know, I could carry it. If I
did there might be implications for me.

00:35:10.000 --> 00:35:14.999
Ah… And that it wasn’t

00:35:15.000 --> 00:35:19.999
going to be a healthy child.

00:35:20.000 --> 00:35:24.999
It already wasn’t. There are pressures.
There are ah… prolife groups

00:35:25.000 --> 00:35:29.999
and there are people who ah… are saying as a
public health initiative that we should decrease

00:35:30.000 --> 00:35:34.999
the number of birth defects. But when you’re
sitting there face-to-face with a couple

00:35:35.000 --> 00:35:39.999
and a result that they have an affected
child, they’re not really thinking about

00:35:40.000 --> 00:35:44.999
the good of society, and they’re also not
thinking about who’s going to be marching outside

00:35:45.000 --> 00:35:49.999
the hospital if they choose to terminate.
That’s highly,

00:35:50.000 --> 00:35:54.999
highly personal choice. I think I didn’t want
to be pregnant anymore. I did not want to carry

00:35:55.000 --> 00:35:59.999
that child anymore, any
longer than necessary.

00:36:00.000 --> 00:36:04.999
If the child was very severe,
what type of medical help

00:36:05.000 --> 00:36:09.999
would my medical insurance cover? What type of medical
coverage? Ah… How… How much of it would they consider

00:36:10.000 --> 00:36:14.999
a lifetime deal, you know? Would
it be just one year, two-year?

00:36:15.000 --> 00:36:19.999
Umm… If it… If it wasn’t severe

00:36:20.000 --> 00:36:24.999
then the stigma, what would… how would
other kids approach… approach him or her?

00:36:25.000 --> 00:36:29.999
I knew it’s going to be a boy. I knew that.
It was extremely important for me personally

00:36:30.000 --> 00:36:34.999
to really confirm the fact that
there was something wrong ah…

00:36:35.000 --> 00:36:39.999
mainly because I’m never sure
in my own scientific work.

00:36:40.000 --> 00:36:44.999
And it was important for me that
we take a little bit of time

00:36:45.000 --> 00:36:49.999
to ensure that the results were accurate. I
don’t know if there’s enough information

00:36:50.000 --> 00:36:54.999
that could ever reassure a parent
that terminating the pregnancy

00:36:55.000 --> 00:36:59.999
is… is absolutely necessary and
that it’s the right thing. We knew

00:37:00.000 --> 00:37:04.999
what kind of a child it was.
Umm… Another thing that

00:37:05.000 --> 00:37:09.999
was very difficult to cope with was that
till the very hard contraction started

00:37:10.000 --> 00:37:14.999
the baby was alive.

00:37:15.000 --> 00:37:19.999
So the process of birth itself killed
that baby. And that was very hard,

00:37:20.000 --> 00:37:24.999
because we went through a certain motion,
terminated the life of something.

00:37:25.000 --> 00:37:29.999
[sil.]

00:37:30.000 --> 00:37:34.999
It’s not easy to forget
that particular point.

00:37:35.000 --> 00:37:39.999
I remember asking her was he alive
and she said, no, he wasn’t. So…

00:37:40.000 --> 00:37:44.999
So we’re good. That was… That was good. He
didn’t suffer anything. He didn’t know anything.

00:37:45.000 --> 00:37:49.999
It was hard.

00:37:50.000 --> 00:37:54.999
But ah… I wouldn’t change

00:37:55.000 --> 00:37:59.999
my mind even now.

00:38:00.000 --> 00:38:04.999
So they shouldn’t take it away from us,

00:38:05.000 --> 00:38:09.999
abortion rights.

00:38:10.000 --> 00:38:14.999
Ah… You know, they shouldn’t harass
physicians who have to perform abortions

00:38:15.000 --> 00:38:19.999
no matter what the reason is.
It’s not anyone else’s business

00:38:20.000 --> 00:38:24.999
when it comes to a decision that’s
already been made. The only other person

00:38:25.000 --> 00:38:29.999
I worked knew was Laurie, my supervisor
now. She was my coworker, and she knew.

00:38:30.000 --> 00:38:34.999
So that morning when I terminated with Desmond, I
did call her up and… and at that point I was crying

00:38:35.000 --> 00:38:39.999
because I was holding him. And so I was
crying, because I got to look at him.

00:38:40.000 --> 00:38:44.999
There are some scars, I think, which…

00:38:45.000 --> 00:38:49.999
I mean it’s just an event… it’s not just a common
event that we can just simply put behind us.

00:38:50.000 --> 00:38:55.000
It’s something very
important that happened.

00:39:05.000 --> 00:39:09.999
Come on baby. Come down my baby, come down, come
down, come down, come down, come down baby.

00:39:10.000 --> 00:39:14.999
Come down my baby. If you’ve
ever attended a delivery

00:39:15.000 --> 00:39:19.999
ah… being at a birth, it is an extremely
intimate moment in somebody’s life,

00:39:20.000 --> 00:39:24.999
in a couples’ life. Umm… And just
to be able to be a part of that

00:39:25.000 --> 00:39:29.999
is a privilege every time.

00:39:30.000 --> 00:39:34.999
Birds, birds…

00:39:35.000 --> 00:39:39.999
After the worries

00:39:40.000 --> 00:39:44.999
I had in the pregnancy I was not worried
about labor and delivery at all.

00:39:45.000 --> 00:39:49.999
I knew that at some point the pain would go away.
That… That was finite. It was going to end

00:39:50.000 --> 00:39:54.999
when the baby was delivered. Coming out.
It’s coming honey, it’s coming.

00:39:55.000 --> 00:39:59.999
Okay, okay… Here comes baby. Hang in there.
Here comes. Here comes baby… Yeah.

00:40:00.000 --> 00:40:04.999
Oh… Oh… Oh… Oh… There you go.
I love you sweetheart.

00:40:05.000 --> 00:40:09.999
Oh, you’re so beautiful. Come on, hey… And
then it was that, you know, that cry.

00:40:10.000 --> 00:40:14.999
It’s a girl and everybody
is jumping around and…

00:40:15.000 --> 00:40:19.999
But the birth was great. But the
birth was… was good. Yeah. Yeah.

00:40:20.000 --> 00:40:24.999
And ah… it was… it was fine, healthy baby
and beautiful… beautiful little boy.

00:40:25.000 --> 00:40:29.999
On Valentine’s Day, Juliana
Baker Cohen was born.

00:40:30.000 --> 00:40:34.999
And she looked fine. And I… And nobody…
nobody thought she had Down syndrome,

00:40:35.000 --> 00:40:39.999
except I noticed her ears were
shaped in an unusual fashion,

00:40:40.000 --> 00:40:44.999
sort of squared off. The night Michael was
born, Jim and I sat in the hospital room

00:40:45.000 --> 00:40:49.999
and drank a bottle of champagne. I mean we celebrated
his birth. Would we have been celebrating his birth

00:40:50.000 --> 00:40:54.999
if the pediatrician had just come in and said, I
have some terrible news, the baby has Down syndrome?

00:40:55.000 --> 00:40:59.999
It was like, I… I was always
clear that she would be

00:41:00.000 --> 00:41:04.999
a wonderful addition to our family.

00:41:05.000 --> 00:41:09.999
And I look at her now and I… I just think, you
know, thank God I had her, thank God I knew enough

00:41:10.000 --> 00:41:14.999
to have her, you know.
Thank God she’s here.

00:41:15.000 --> 00:41:19.999
I… I truly, so often when I look
at her, that’s what I think.

00:41:20.000 --> 00:41:24.999
I’m among those dads who likes going with a
camera. So I was busy taking lot of pictures.

00:41:25.000 --> 00:41:29.999
But after about, I don’t know, a
minute or two, I had the sense,

00:41:30.000 --> 00:41:34.999
this is not… there’s something wrong here. Things were,
I don’t know if you say that were swirling around.

00:41:35.000 --> 00:41:39.999
There’s an awful lot of busyness and it was kind of… I
felt… I kind of felt like I was suspended at midair

00:41:40.000 --> 00:41:44.999
and then finally ah… one of the ah…

00:41:45.000 --> 00:41:49.999
pediatric nurses came over and said we
need to… we need to tell you something.

00:41:50.000 --> 00:41:54.999
You need to know that your son has
Spina bifida. Next thing I knew,

00:41:55.000 --> 00:41:59.999
I was lying in bed in the recovery
room and I was confused. And umm…

00:42:00.000 --> 00:42:04.999
looking back now I feel like I wish he kind of
worked his way into it, but he just… he said,

00:42:05.000 --> 00:42:09.999
\"I don’t know any other way to tell you
this but that Ethan has Spina bifida.\"

00:42:10.000 --> 00:42:14.999
And I had a very, very
negative reaction. I umm…

00:42:15.000 --> 00:42:19.999
I… I felt like this is finally
something I can’t deal with.

00:42:20.000 --> 00:42:24.999
I was there alone. Juliana was sleeping. And I remember, it’s the
first time I’ve ever done this that, my arms went up in the air

00:42:25.000 --> 00:42:29.999
and I started to cry and I said, \"Just give
me the strength, give me the strength.\"

00:42:30.000 --> 00:42:34.999
And then I remember crying and praying. And
it wasn’t a bad feeling. It… It was just,

00:42:35.000 --> 00:42:39.999
I need the strength. I don’t… It’s
okay if Juliana has Down syndrome,

00:42:40.000 --> 00:42:44.999
but it’s not okay if I’m not there
to be who… and do what she needs.

00:42:45.000 --> 00:42:49.999
And I didn’t really know what it was. I know a doctor,
not my doctor, but a doctor that was covering for her

00:42:50.000 --> 00:42:54.999
made the statement to me, this should have
been… this should have been known before

00:42:55.000 --> 00:42:59.999
the baby was born. And I remember feeling very
resentful that he had that attitude about it.

00:43:00.000 --> 00:43:04.999
Children with disabilities are stressful,

00:43:05.000 --> 00:43:09.999
but there is a blessing in the stress too. You
know, you mature in different ways, you grow up.

00:43:10.000 --> 00:43:14.999
Umm… You’d have to grow up
with the child. Umm… So I…

00:43:15.000 --> 00:43:19.999
I… I think we needed to see that
those children make a contribution

00:43:20.000 --> 00:43:24.999
umm… of their own and
also into others lives.

00:43:25.000 --> 00:43:29.999
And, you know, you don’t know all of that that…
that’s going to be when you have some tests that says

00:43:30.000 --> 00:43:34.999
something may be wrong for what
about everything that’s right

00:43:35.000 --> 00:43:39.999
about the child. Since
when I was a little kid

00:43:40.000 --> 00:43:44.999
ah… I went to what would be

00:43:45.000 --> 00:43:49.999
Winston Prouty Center in
Brattleboro, Vermont.

00:43:50.000 --> 00:43:54.999
And then I went to the

00:43:55.000 --> 00:43:59.999
Jonathan Daniels School in Keene.

00:44:00.000 --> 00:44:04.999
And then I went to the Keene Middle School.

00:44:05.000 --> 00:44:09.999
And then I went out to Keene
High School. And then

00:44:10.000 --> 00:44:14.999
I graduated last year Natasha from 1992.

00:44:15.000 --> 00:44:19.999
And we had

00:44:20.000 --> 00:44:24.999
300… between 330 to 340 graduates.

00:44:25.000 --> 00:44:29.999
Right now I’m now working

00:44:30.000 --> 00:44:34.999
at… at Cheshire County Savings Bank

00:44:35.000 --> 00:44:39.999
and also… I’m also a volunteer
fire fighter here in (inaudible).

00:44:40.000 --> 00:44:44.999
Shawn is certainly not embarrassed to
get in front of any size of crowd.

00:44:45.000 --> 00:44:49.999
He’s spoken and given speeches to as
many as I’d say 300 or more people.

00:44:50.000 --> 00:44:54.999
He doesn’t face them in
the least, so he’s… his…

00:44:55.000 --> 00:44:59.999
you know, he’s kind of has
a popularity I guess.

00:45:00.000 --> 00:45:04.999
And a lot of people now are looking
at us to see where they should go,

00:45:05.000 --> 00:45:09.999
ah… because in our… basically in the groups
that we deal with I think he is the oldest.

00:45:10.000 --> 00:45:14.999
The ones that are older than he,
unfortunately have an awful lot of problems.

00:45:15.000 --> 00:45:19.999
They don’t have… They didn’t have
any of the exposure that he had,

00:45:20.000 --> 00:45:24.999
you know, integrated education, and… and
mainstreaming, and early intervention

00:45:25.000 --> 00:45:29.999
and everything that these kids need to have.
You know, he was probably one of the first

00:45:30.000 --> 00:45:34.999
that had them. We were so prepared
for this baby. Our families knew,

00:45:35.000 --> 00:45:39.999
everyone knew. I was able to make appointments
for Michael months before he was born.

00:45:40.000 --> 00:45:44.999
I had had the early intervention program all set to
come and see. They saw him a week after he was born.

00:45:45.000 --> 00:45:49.999
We went to Children’s Hospital in Boston for a
total evaluation when he was six weeks old.

00:45:50.000 --> 00:45:54.999
I made that appointment three months
before he was born. We were able to

00:45:55.000 --> 00:45:59.999
really educate ourselves. And then when I got pregnant
the third time, umm… I really wanted to have the test.

00:46:00.000 --> 00:46:04.999
I felt that as much as I adore
my child with Down syndrome,

00:46:05.000 --> 00:46:09.999
umm… I didn’t think I wanted to have
another one at that point. I think…

00:46:10.000 --> 00:46:14.999
I thought of my older daughter and I said, \"Is
it fair for her to have two disabled siblings

00:46:15.000 --> 00:46:19.999
that she will hopefully want to
look after when she’s older?\"

00:46:20.000 --> 00:46:24.999
I didn’t think that was fair to her. I think I
was thinking more of her than anything else.

00:46:25.000 --> 00:46:29.999
So we all get prenatal testing I
think we’re growing very rapidly

00:46:30.000 --> 00:46:34.999
in… in the direction
that’s going to be testing

00:46:35.000 --> 00:46:39.999
for anything you can fear and have a test
for. It was hailed then at the beginning as…

00:46:40.000 --> 00:46:44.999
as a breakthrough and a major advance.
I think now,

00:46:45.000 --> 00:46:49.999
one looks at it as offering some very useful and
for some people very important opportunities.

00:46:50.000 --> 00:46:54.999
And it also offers for other people

00:46:55.000 --> 00:46:59.999
some terrible challenges to the way medicine
has practiced, in the way public health issues

00:47:00.000 --> 00:47:04.999
are… are framed and discussed and…

00:47:05.000 --> 00:47:09.999
and written about. There is no question
about the fact that the benefits,

00:47:10.000 --> 00:47:14.999
the advantages of having available prenatal testing
are also a burden. And they’re burden for everybody,

00:47:15.000 --> 00:47:19.999
ah… for the insurance companies that have to pay for the
tests, for the families that have to pay for the tests,

00:47:20.000 --> 00:47:24.999
the families that receive the news and
then attempt to struggle with the news,

00:47:25.000 --> 00:47:29.999
and how to react to the news, and how
to… and what to do about it. Umm…

00:47:30.000 --> 00:47:34.999
And for the professionals who may
struggle hours or days before the news

00:47:35.000 --> 00:47:39.999
is released to the parents and other
physicians on how to interpret these results,

00:47:40.000 --> 00:47:44.999
whether to repeat them, how reliable
they are and so on and so forth.

00:47:45.000 --> 00:47:49.999
And so, ah… we face therefore
the dilemma of all people

00:47:50.000 --> 00:47:54.999
who are faced with freedom and with stresses.
Ah… It is not always an unmitigated good.

00:47:55.000 --> 00:47:59.999
I want to make people miserable for
their whole lives for friendly.

00:48:00.000 --> 00:48:04.999
But I think there are some things in life that we should be uncomfortable,
some decisions that we take that should make us uncomfortable.

00:48:05.000 --> 00:48:09.999
We should not just go through life as if we
are ah… you know, as if there’s no problem.

00:48:10.000 --> 00:48:14.999
It’s not what reality is all about.
And every prenatal test

00:48:15.000 --> 00:48:19.999
should make us uncomfortable with saying, what do
we do, you may go ahead and do it, but I think

00:48:20.000 --> 00:48:24.999
we should be uncomfortable first.
One, two, three…

00:48:25.000 --> 00:48:33.000
[music]

00:48:35.000 --> 00:48:39.999
Now it seems so much a
part of who he is ah…

00:48:40.000 --> 00:48:44.999
that if he did not have Spina bifida, he wouldn’t
be Ethan. That doesn’t mean I wouldn’t love him

00:48:45.000 --> 00:48:49.999
if he didn’t have it, but he’d be a different
child. When he was three years old,

00:48:50.000 --> 00:48:54.999
he ah… started saying he hated Jesus, which is
really embarrassing when your husband is a minister.

00:48:55.000 --> 00:48:59.999
And, you know, we tried all
the approaches, ignoring it,

00:49:00.000 --> 00:49:04.999
because it was an attention getting thing. We
tried discussing it. And I can remember sitting

00:49:05.000 --> 00:49:09.999
in the chair right over here one day and him
saying that. And I said, \"Oh mommy loves Jesus!

00:49:10.000 --> 00:49:14.999
I wish you love Jesus too. Why don’t
you love him? \" And he said, \" I can’t,

00:49:15.000 --> 00:49:19.999
I can’t.\" And then he said, he was
only three years old, he said,

00:49:20.000 --> 00:49:24.999
\"Because he pulled the lever that made me
go round and round and when I came out,

00:49:25.000 --> 00:49:29.999
I couldn’t walk.\" And he,
from our family structure

00:49:30.000 --> 00:49:34.999
and from watching us pray and stuff, recognized God as being the one
in control, which is something we didn’t want to communicate to him,

00:49:35.000 --> 00:49:39.999
but his conclusion was
therefore, if I suffer pain,

00:49:40.000 --> 00:49:44.999
it’s God’s fault. And he said
to me also, \"Jesus could walk

00:49:45.000 --> 00:49:49.999
and I couldn’t.\" Having suffered
through some of these things

00:49:50.000 --> 00:49:54.999
it has made him a very loving person. And so
I… I guess I would have trouble changing that.

00:49:55.000 --> 00:49:59.999
Ah… Although there is many
things he suffers throughout,

00:50:00.000 --> 00:50:04.999
I wish I could take away for him.

00:50:05.000 --> 00:50:09.999
At one point I realized there was only one
thing missing that I needed to understand

00:50:10.000 --> 00:50:14.999
in order to get the whole picture and that was the
meaning of life. If I understood the meaning of life,

00:50:15.000 --> 00:50:19.999
this would all make sense. And it was a… that’s an
intellectual problem, that’s really what was missing.

00:50:20.000 --> 00:50:24.999
I think it’s not solvable. I mean, I think
there is no way a woman can simply sit down,

00:50:25.000 --> 00:50:29.999
be a good consumer with the Yellow Pages
and three textbooks, get the information

00:50:30.000 --> 00:50:34.999
she needs and make a rational choice. She really has
to give some thought about the meaning of life.

00:50:35.000 --> 00:50:39.999
Ah… It’s unanswerable. It’s
fundamentally unanswerable

00:50:40.000 --> 00:50:44.999
and yet we’re asking every pregnant woman
to start confronting those decisions.

00:50:45.000 --> 00:50:50.000
[sil.]