Sue Hartigan <[EMAIL PROTECTED]> writes:
Hi Jackie:
While looking for something else I found this. I thought it very
interesting and may give you some answers to your questions, I hope.
Sue
Conjoined Twins Face Life and Death
March 11, 1998
DIANE SAWYER
There was a rare event here in California about a
month ago, a set of conjoined twins was born. Gabrielle
(ph) and Michaela Garcia (ph) share their entire lower
body. They have only two legs. Separating them, while
technically possible, is very risky, but it is a decision
that their parents and doctors must now face --
separate them or let them live on as they are.
Tonight Dr Nancy Snyderman explores this medical
and emotional question with some extraordinary
families. It is a story of lives that are intertwined in
ways
most of us will never understand.
DR NANCY SNYDERMAN, ABC NEWS (VO) It
is May 1, 1996. Michelle Roderick is about to have her
first babies, twins Janelle (ph) and Shawna (ph). She�s
excited and nervous. Babies may be born every day,
but Janelle and Shawna are different�identical twins
who never separated from each other completely. An
accident of nature on or about the 14th day of their lives
in the womb has joined them together from the bottom
of the chest through the abdomen, sharing diaphragm
and liver.
Michelle and her husband, Jeff, first learned that the
twins would be joined during a routine ultrasound.
Since that time, they have consulted with doctors,
agonized and prayed. But at this moment, they are just
proud parents.
Conjoined twins are extremely rare, about 1 in
100,000 pregnancies, and only about 1 in 10 of those
survive past birth. Janelle and Shawna are lucky. They
are healthy and separable.
But sometimes separation means choosing one life
over another. In 1993, Angela (ph) and Amy Lakeburg
(ph) were born sharing a single deformed,
six�chambered heart. That heart could never be
divided in a way that would pump enough blood for
both girls. Only one could live. Dr James O�Neil (ph),
now at Vanderbilt University Medical Center, led the
surgical team in a controversial operation at Children�s
Hospital of Philadelphia.
DR JAMES O�NEIL, SURGEON The hearts were
abnormal, but the one side was fixable by conventional
techniques�difficult, but conventional. And the other
side, there was no way to fix it. One had to be selected
and the other couldn�t survive. But that was ordained by
that anatomy.
DR NANCY SNYDERMAN (VO) On the day of their
surgery, Angela�s fingernails were painted pink to
signal that she would live. Amy�s were not. When the
moment came to take Amy off life support, it was
sobering.
DR JAMES O�NEIL The feeling when it is under
way and when it is over, I think you can understand, is
one of internal quiet and reflection and respect for the
event and for the individual who didn�t survive.
DR NANCY SNYDERMAN (VO) The bold
experiment ultimately failed. Just before her 1st
birthday, Angela died, too. She never even left the
hospital. (on camera) Parents and doctors must
sometimes take calculated risks, but are we on a
slippery slope when we intentionally sacrifice the life of
one twin in order to save another?
DR ALICE DRAGER (PH), MEDICAL ETHICIST I
just simply don�t know of any other situation in medicine
in which anyone is intentionally asphyxiated. That�s only
done in the case of conjoined twins.
DR NANCY SNYDERMAN (VO) Dr Alice Drager, a
medical ethicist at Michigan State University, calls it
�asphyxiation� when heroic surgery is tried to save one
twin at the other�s expense, and she thinks it is a moral
outrage.
DR ALICE DRAGER What bothers me is that,
essentially, the approach being taken is called a
�monster� approach, which is saying, �This child is so
problematic, so grotesque, so monstrous, that no
matter what we do, whatever we do will be better, will
be more compassionate, more just than simply leaving
the child alone.� And I don�t think that�s true.
DR NANCY SNYDERMAN (VO) Is it better to leave
them alone? Do we doctors and parents view these
lives through a lens clouded by our own fears and
prejudices? What do twins themselves think when they
grow up?
DR ALICE DRAGER So many who have lived long
enough to do so speak of their lives as normal, and that
shocks the heck out of the rest of us. They describe a
much higher level of quality of life than people would
assume that they have. Basically, people grow into the
bodies in which they�re given.
REBA CHAPPELLE, CONJOINED TWIN Good
day for you to do what you like to do.
LAURIE CHAPPELLE, CONJOINED TWIN
What�s that?
REBA CHAPPELLE Hang out at your mall.
LAURIE CHAPPELLE Oh, very funny.
DR NANCY SNYDERMAN (VO) Reba and Laurie
Chappelle would whole�heartedly agree that life is
worth living. When they were born 36 years ago,
medical technology could not separate them. It still
cannot today because they share several major blood
vessels in their brains. Reba also suffers from spina
bifida, so her sister wheels her around in a special
chair, their lives and their bodies always intertwined.
(on camera) If a doctor had come to you guys when you
were 7, 8, 9 or 10 and said, �Would you like to be
separated?� ...
LAURIE CHAPPELLE No.
DR NANCY SNYDERMAN ... �Here are the risks,�
you would have said no.
LAURIE CHAPPELLE No.
DR NANCY SNYDERMAN Why?
LAURIE CHAPPELLE Because we knew the risks.
You never have a perfect ...
REBA CHAPPELLE Never�never a perfect
guarantee.
LAURIE CHAPPELLE Right. There�s never a
perfect guarantee in life, ever. And there�s nothing
wrong with us now, so why ruin when there�s nothing
wrong?
DR NANCY SNYDERMAN (VO) But Christine
Wooden believes she received the gift of a normal life
from her conjoined twin, Betsy (ph). They were born
attached from the chest through the abdomen 25 years
ago. A day later, surgeons separated them. Betsy�s
abnormal heart could not sustain her without her
sister�s help, and a day after that she died. Their
mother, Janna, hospitalized from the difficult delivery,
was unable to attend Betsy�s funeral.
JANNA WALZECK, MOTHER OF CONJOINED
TWINS Her heart defect was to the point where she
just could not survive.
CHRISTINE WOODEN, SEPARATED FROM
CONJOINED TWIN And when she was with me, of
course, she would feed off of me.
DR NANCY SNYDERMAN (VO) Janna Walzeck
never for a moment considered keeping her girls
together.
JANNA WALZECK They needed to be separated,
and then what would happen, would happen. The
stronger would survive, the weaker might not, but that
was just�sometimes you have to sacrifice something
to get�to get another life.
DR NANCY SNYDERMAN (VO) Janna�s twins
came as a complete surprise. The Rodericks, whose
daughters� birth you just saw a few moments ago, knew
conjoined twins were on the way. (on camera) Did the
idea of aborting this pregnancy ever pass through your
minds?
JEFF RODERICK, FATHER OF CONJOINED
TWINS It did. We decided to wait for a little while, and
we had several tests done, and so on and so forth. And
when all those came back pretty positive, we decided
to go on with it.
DR NANCY SNYDERMAN (VO) The tests were
reassuring. They showed that the girls had separate
hearts, lungs, gall bladders and intestines. They had
two arms and two legs each. Not only would separation
be possible, it could be quite successful.
The girls spent a month at Loma Linda Medical
Center as the surgical preparations went forward.
Finally, 30 days after they were born, the separation
took place. Still, it proved risky. Shawna suffered
cardiac arrest on the table and had to be resuscitated.
But even knowing the dangers, the Rodericks still
wanted their girls separated.
JEFF RODERICK The problem with them being
together is they get sick. If one dies, the other one dies,
just almost immediately. So as hard as it would be,
you�d basically have to choose�you know, you�d
basically have to choose one.
MICHELLE RODERICK, MOTHER OF
CONJOINED TWINS It would have been tough.
DR NANCY SNYDERMAN (VO) They never had to
make that terrible choice. Janelle and Shawna survived
and thrived. Twenty months later, they are happy,
healthy little girls. Besides, they say, the girls have
personalities so different that keeping them joined
might have been difficult.
MICHELLE RODERICK I think one would be trying
to go one way, the other one would be trying to go the
other way, and we�d have many fights on our hands.
DR NANCY SNYDERMAN (VO) That�s an issue
the Chappelles have solved, despite their different
interests and personalities. When Laurie has to clean
up, Reba goes along for the ride.
REBA CHAPPELLE Hah. Welcome to my room.
DR NANCY SNYDERMAN (VO) When Reba, an
aspiring country singer who has taken the name of her
idol, Reba McIntyre (ph), wants her space, they go into
her room. Laurie is not allowed to talk there. It�s Reba�s
time. (interviewing) Can you sing for us now?
REBA CHAPPELLE OK. (singing) Mama taught
me a lot about living. Always be honest and kind. Give
a little back, give a little back, give a little back.
You�ll
do just fine.
DR NANCY SNYDERMAN You have a lovely voice.
REBA CHAPPELLE Thank you.
DR NANCY SNYDERMAN (VO) Conjoined twins
have been part of the medical literature for 1,000 years,
but perhaps the most famous and longest�surviving
twins to date have been Chang and Eng Bunker, who
gave us the name �Siamese twins.� They died within
five minutes of each other when they were 63. Their
death cast, showing the band of tissue that connected
them, is housed in Philadelphia�s Mutru (ph) Museum.
(on camera) What really frightens us about conjoined
twins is that so many grow up so ordinarily. They long
for the same things you and I do�love, companionship,
family�and that means sex, the part that most of us
have a difficult time imagining. (VO) Chang and Eng
married sisters, daughters of a clergyman. Chang
fathered 10 children, while Eng had 12. And they
shocked their rural North Carolina community, which
could not understand how anyone�s bed could be
shared by an onlooker, even if by anatomy and not by
choice.
Others had trouble even getting married. Violet (ph)
and Daisy Hilton (ph) were attractive 1930s Vaudeville
performers who also starred in two now�forgotten
movies.
VIOLET AND DAISY HILTON (singing) Never say
you�ll never fall in love.
DR NANCY SNYDERMAN (VO) But Violet was
refused a marriage license on the grounds of morality
and decency several times before finally being allowed
to wed in Texas.
VIOLET HILTON, CONJOINED TWIN I love Luis
(ph) very, very much, and he loves me, and I don�t see
any reason in the world why we should be denied the
privilege of being happy .
DR NANCY SNYDERMAN (interviewing) Sexuality
is something that comes very naturally to human
beings, whether you�re conjoined twins or not.
LAURIE CHAPPELLE Absolutely.
REBA CHAPPELLE Don�t worry. If she has it, I
don�t give a darn. I close my eyes and ...
DR NANCY SNYDERMAN But how does that
work?
REBA CHAPPELLE It works.
LAURIE CHAPPELLE Well, she can�t see
anything.
REBA CHAPPELLE I don�t care. I block it out.
DR NANCY SNYDERMAN So you�re just quiet and
you drift off to some other place?
LAURIE CHAPPELLE Uh�huh.
REBA CHAPPELLE Yeah! She�I�m not
interested.
LAURIE CHAPPELLE My private life is just mine,
whether she�s here�she�s only here physically.
REBA CHAPPELLE I�m here bodily.
LAURIE CHAPPELLE Bodily, I mean. That�s it.
REBA CHAPPELLE That�s it.
LAURIE CHAPPELLE Yeah. And the guy gets
used to that. You know, the guy has to. If he wants to be
involved with me, he�s got to get used to having her
around.
DR NANCY SNYDERMAN (VO) Christine Wooden
married Walt (ph) three years ago. He has accepted
the fact that her missing twin will always be a part of
their lives.
CHRISTINE WOODEN Oh, yeah, I talk to her. I talk
to her on good days and bad days and happy days and
sad days. She knows everything and she always has.
WALT, CHRISTINE�S HUSBAND She�ll say she
talked to Betsy, but I guess it�s real personal, just
between them. But she will let me in on it.
DR NANCY SNYDERMAN (VO) In fact, Christine
buys a rose for her sister for every special occasion.
The day we talked to her, her sister�s rose was there.
CHRISTINE WOODEN I think of her as a guardian
angel in my life, and I know she�s up there watching and
I know she�s here watching. And one day, I think I will
meet her in heaven.
LAURIE CHAPPELLE Put all the bill companies in
a mall. Then you know they�d get paid.
REBA CHAPPELLE Because people are usually
at the mall.
DR NANCY SNYDERMAN (VO) Laurie and Reba
are best friends, too. Still, they know that when one
dies, the other will follow in minutes. Their doctors have
explained that only emergency surgery at that time
could offer any chance for the other to survive.
(interviewing) And Reba, if she died, would you want to
be separated?
REBA CHAPPELLE Well, if it means saving my
life, yes.
LAURIE CHAPPELLE I wouldn�t want her to die
just because I died, either.
REBA CHAPPELLE And vice versa.
LAURIE CHAPPELLE I wouldn�t.
REBA CHAPPELLE If I did, she�d ...
LAURIE CHAPPELLE She wouldn�t ask me to die
with her.
REBA CHAPPELLE No!
LAURIE CHAPPELLE And I wouldn�t ask her to die
with me. That�s inhumane.
DR NANCY SNYDERMAN (VO) It shocks some
that Laurie and Reba can be happy, that they can see
meaning in their lives.
LAURIE CHAPPELLE This is�this was God�s
purpose.
NANCY SNYDERMAN (interviewing) And what is
God�s purpose?
LAURIE CHAPPELLE I don�t know. I mean, I guess
to just show people that no matter which way you are,
you can live a fulfilling life, and that, you know, people
should not judge on what you look like, and they should
judge on your character and what�s in your heart.
DIANE SAWYER Reba and Laurie think one of the
biggest misconceptions about them is that they�re one
person with one mind. They say they have two very
distinct personalities, different interests and friends,
and they want the rest of the world to know that they are
two very happy people.
--
Two rules in life:
1. Don't tell people everything you know.
2.
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