May 4, 2012

"What if you knew, even before your child was born, that she wouldn't look like everyone else?"

Treacher Collins syndrome. "Parents almost always opted to abort, doctors said."
"It was kind of strange sometimes with the doctors, some of whom I think really, really questioned why we had this baby," says Eric Beatty, Clara's dad.
ADDED: This story (and the picture at the link) called to mind "Autobiography of a Face," an excellent memoir.

38 comments:

Rusty said...

Cool kid. Cool parents.

Rusty said...
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Dave said...

When did doctors become so murderous?

The Crack Emcee said...

"I just don't want her spirit to ever be crushed so much that she can't recover. That's why it's good that she has the thick skin. I just want to keep it thick. She needs it."

Don't we all, lady, don't we all. Good luck, kid - not that, living with these Nazis, there is any.

Disapproving stares in the maternity ward,...geez. I swear, Belgians are some of the dumbest people on the planet,...

MadisonMan said...

Her good coping skills will be important in middle school.

Jason said...

At least nobody criticized Santorum when he suggested they practice euthenasia in Holland.

EDH said...

The decision to give birth to Clara certainly consigned their daughter to a more difficult life than most.

But it's the only life Clara could ever have, and I'm sure if given the choice, Clara would want to live it rather than not.

The next few years would be so challenging that the family moved back to the United States, both for family support and to seek medical care at Chicago's Children's Memorial Hospital and other institutions. There were breathing and feeding issues. The family had 24-hour nursing care for the first three years of Clara's life because she vomited so frequently.

They must be 1%-ers.

KJE said...

There is a little girl at my son's daycare. I think she has this condition.

Every morning, I walk my son to the daycare, and help him hang up his hat and his jacket and backpack.

And on the mornings that this little girl arrives at the daycare before we do; she always comes over and gives my son, and me, a hug.

Every morning.

jimbino said...

The big problem, of course, is that the family manages to rear Clara with the help of Other People's Money. What that means is that there are other needy children, some from far poorer families, who are deprived of food, nurturing and education because our funds are flowing to a narcissistic rich family.

TMink said...

Children are gifts from God. I hold a policy of not killing a gift from God.

Trey

Bryan C said...

"What that means is that there are other needy children, some from far poorer families, who are deprived of food, nurturing and education because our funds are flowing to a narcissistic rich family."

Yes, because, as we all know, there's only so much food, nurture, and learning to go around and it's up to us to ration it fairly. Why can't they be like the poor people, and just abort when we tell them to abort?

Jason said...

It's funny that the reporter makes a point of saying that there was much more prenatal screening done for this child then would ever be done in the U.S., but the parents still leave for the U.S. for the superior medical care.

Dan in Philly said...

I wonder if any of those parents who chose to abort ended up not having any more pregnancies and wondered if it was a good idea in hindsight.

Not getting into the whole issue of every child deserving to be born, what about the issue of women who abort their children who are sure they can easily have another - in many cases a woman's body can only do so much, and with women getting pregnant later and later in life the runway gets shorter and shorter - I wonder if there are any studies on the long term effects of fertility abortions may have.

dreams said...

As Ann Coulter has said if they ever find a gay gene then we'll see gay babies being aborted as is currently happening with Down Syndrome babies, over 90%. George Will has a good article about his Down Syndrome son in the Washington Post.

Pete said...

With that kind of logic, jimbino, we shouldn't waste another dollar or even another minute and kill this child now.

Rocketeer said...

With that kind of logic, jimbino, we shouldn't waste another dollar or even another minute and kill this child now.

With that kind of logic, presuming he's not being sarcastic, we shouldn't waste another dollar or even another minute on jimbino.

Mitchell said...

It's a good thing to be reminded every now and then that plastic surgeons do more than boob jobs on porn actresses.

edutcher said...

I'm sure there are cases where the opposite is true, but it seems that children like Clara almost always turn out to be much more a gift than a burden.

Dave said...

When did doctors become so murderous?

Not sure, but it seems that word, "government", plays a big role.

PS Maybe jimbino should be retroactively aborted. He seems to be wasting a whole lot of oxygen.

Dust Bunny Queen said...

It doesn't say in the article, but I assume (like EDH) that the parents have comfortable wealth, good jobs and good medical insurance. Obviously they also have a nice support system from family, friends and church.

Take away the money and insurance and the decision would have most likely been much different.

Jane said...

What a beautiful, intelligent, sweet child. Her parents have done a wonderful and enviable job raising her.

tim in vermont said...

"The big problem, of course, is that the family manages to rear Clara with the help of Other People's Money. What that means is that there are other needy children, some from far poorer families, who are deprived of food, nurturing and education because our funds are flowing to a narcissistic rich family." - jimbino

So then, you are going to be sitting on the Death Panel then? Great. It is always a good thing to assign different values to the lives of people who are different, it has worked out so well in the past that it should be encouraged.

Dust Bunny Queen said...

@ Tim in Vermont

So you DO see the problem with Socialized medicine AKA: ObamaCare then.

The STATE will decide what coverage you can have base on age, condition and cost.

Why do you think these people moved BACK to the United States and are probably using their privately purchased insurance program instead of relying on the largesse of Belgium to provide care for their disabled child?

What do you think will happen in the future in the US when the government Death Panels make those decisions?

These people and their child are fortunate to have had alternatives. Money, insurance, access to good medical care.

Most people world wide do not have this luxury. Our access to this is also being limited and children like Clara will be considered dispensable and too expensive for the "system" to support. Bye bye Clara.

The Crack Emcee said...

Jason,

It's funny that the reporter makes a point of saying that there was much more prenatal screening done for this child then would ever be done in the U.S., but the parents still leave for the U.S. for the superior medical care.

Now THAT's thinking - and you stop it right now!

Rusty said...

Dave said...
When did doctors become so murderous?


They are in Europe. It's the reason they have such a low infant mortality rate compared to the U.S.. We , you know, actually try to save at risk infants and sometimes don't succeed.
Just sayin'.

n.n said...

They may want to reconsider further procreation, but there is no justification for artificially ending a developing human life. The woman and man implicitly accepted responsibility for this new life which was conceived of their voluntary behavior.

Methadras said...

For this child, life is happiness and the unfortunate thing is that there are people out there that think playing god would have saved her and her parents from unhappiness due to her condition. This is a clear message that leftards believe death is happiness. This family and this child has proven them wrong.

sydney said...

My son went to school with a girl with a similar or same syndrome. She was very outgoing and involved in extracurricular activities. Graduated at the top of their class and is studying biomedical engineering now. Her parents are not wealthy. I always admired her spirit.

howzerdo said...

My grandniece's sixth birthday is today. A serious anomaly was detected during ordinary ultrasound in January 2006. (It was not the same as Clara's.)

My nephew and his wife felt pressured by doctors and nurses to terminate, but they refused. This happens to some degree even in the US, whether due to pressure from insurers, hospitals, or because of personal beliefs regarding birth defects, I am not sure.

She spent the first four months of her life in neonatal intensive care and had five surgeries by age 3. She's finished for now; whether she has another when she is a teenager will be her choice, as it would be purely cosmetic. She's a million dollar baby.

She is blessed with a sunny disposition and today she is a bright, beautiful, happy girl who is finishing kindergarten. She's a gift to her entire extended family.

tim in vermont said...

"It's funny that the reporter makes a point of saying that there was much more prenatal screening done for this child then would ever be done in the U.S., but the parents still leave for the U.S. for the superior medical care"

I doubt it unless they mean that the kids have to pass through a panel of Gattica style tests to see the light of day.

Bender said...

"It was kind of strange sometimes with the doctors, some of whom I think really, really questioned why we had this baby"

All children are disabled, all are disfigured, all are less-than-perfect in some way. Everyone has some kind of problem. For some parents, the problem is that the child has that horrific condition called "life."

But regardless of condition, not only does every parent have the obligation to care for these helpless beings, these images of Christ in miniature, but we all have an obligation to love and nurture them.

And one day, we too will all be disabled, disfigured, stooped over with age. Let us all pray that people then will not say that they do not know if they could take care of us, that we should simply be put away someplace.

I know also that we all will have such thoughts, thinking that we could not take care of the sick, disabled, disfigured, and that we would not want to. I cannot say that I have not had such thoughts. I have. But they are wrong thoughts.

If I could bring up just one example. A few years ago, the Discovery Channel and TLC showed a documentary about a little girl who was "born without a face." The original documentary and a couple of follow-ups have shown since then.

To be honest, when I first saw little Juliana Wetmore (now 9 years old), I was repulsed, so great is her disfigurement (which they are correcting somewhat by many, many, many painful surgeries). As I watched her, unable to speak or even eat properly, but banging on a drum or some other toy like any other child, I began to see who she really was. As she was in the hospital for yet another operation, obviously painful for this innocent little girl, all she wanted was for her daddy to pick her up and hold her. And when he did, she put her little infant/toddler arms and head on his chest, like any little girl and was comforted.

And I saw then that she was not this horribly grotesque monster -- she was a little girl, a wonderfully beautiful little girl. More beautiful than any other perhaps, because of her infirmities and disfigurement.

I have thought about her often since then, this image of Christ Himself, this image of Love itself. And although such children may receive little here in this life, may God make them princes and princesses of Heaven, above all of us who have received so much here.

sleepless nights said...
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sleepless nights said...
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chuck b. said...

In a very poor world--one without extensive medical testing or the technology to resolve complicated "feeding and breathing issues" present at birth--the little girl would have likely died soon after birth.

In a less poor world where at least some screening and abortion was available, she would, in some cases, not have been born at all.

In a wealthy world, she may live and be cared for suitably.

It's fine to oppose abortion always, but there is some room to at least ponder how the presence of wealth informs people's decisions and assumptions. At the very least, this seems like an example of how it is better to be wealthy than poor!

I don't know what it's like in Belgium, but in America I think it's common to make decisions based on the assumption of wealth. It's a big part of the problem in our budgeting and political disagreements, as much as it is a blessing in our collective lives.

Lyle said...

Bless these people. They have a lot of character.

Tarzan said...

Obviously they also have a nice support system from family, friends and church.

Take away the money and insurance and the decision would have most likely been much different.


Yes, it's true, sadly, that people who make sound decisions throughout their lives often get to reap the benefits later on of those decisions. Increased opportunity and broader options in times of crisis. Friends, insurance, a house, money in the bank and that sort of thing.

Take away the friendships, familial support, sound decision making, planning for the future, faith in life and a God even.

THEN where would they be?

Heck, why stop there?

Cut off their arms and legs and throw them into the street. THEN where would they be.

Oh, yeah. Friends and family.

But still, it's unfair or something. I think.

Bender said...

I don't know what it's like in Belgium

Belgium, home of St. Father Damien, who volunteered to give his life, literally, to the poorest of the poor at the leper colony at Molokai, a living hell in the midst of a tropical paradise. Poorest of the poor because they too were unwanted, hated, despised, and outcast.

Father Damien was able to exclaim to them with genuine joy, "we lepers," for he was one with them in love at Molokai even before he was one with them after contracting the disease in the flesh.

Bender said...

What should our response be to the unfortunate, those enduring some hardship or suffering?

We could ignore them, pretend that they do not exist. And that is a popular way to deal with such problems. To simply be blind to them. Or, we could take notice of them, but only for a moment, only long enough to banish the person who suffers, as happened to the "lepers" who were sent to the settlement at Kalaupapa on Molokai, only to be forgotten or thought of as already dead.

Another response is, instead of thinking of them as dead, to make them really dead. To eliminate the problem by eliminating the one who is causing us the discomfort of having to consider how to deal with them. That is, we could simply abort the problem away. Or euthanize the problem. Eliminate suffering by eliminating the one who suffers. An overdose of morphine, forced starvation and dehydration, a brick upside the head, the use of Zyklon-B -- problem solved.

If we recognize that the unfortunate sufferer needs assistance, here too, there are different alternatives.

We can simply say, "let someone else do it." That too is a popular response. "Let the government deal with them; after all, it's the government's job. Besides, government has 'experts.' And we'll simply take someone else's money -- the rich -- to pay for it." Or, a similar sentiment is to let some private charitable institution do it.

But are these really the only answers? Are these the best answers?

No. They are not.

Rather, there is another answer to the question of how to respond to the unfortunate, the one who suffers, and the unwanted -- the "lepers" of our time. And that answer is the individual gift of self in love. This is the answer that Father Damien, the leper priest, gave to the people of Molokai. This is the answer that gives hope -- true hope.

And such love is an answer that we all can, and should, give. Eliminating suffering by eliminating the one who suffers is no answer, certainly it is not a humane or civilized answer. Rather, the only proper answer is to love them, to have compassion for them, from the Latin meaning "to suffer with," to accept the other who suffers and take up that suffering so that it is shared suffering penetrated, and thus transformed, by love and providing consolation, from the Latin "to be with another in solitude," so that it ceases to be solitude. In this way, one gives the gift of hope, of the strength to persevere and endure through any hardship.

Such love is a far better way than to dehumanize the one who suffers, to ignore them, or to eliminate them by banishment or by killing them.

John Lynch said...

I have a son who looks normal, but has all kinds of problems. Is that better? I don't think that dumping on social programs for the disabled is dignified or moral. My son certainly benefited from early preschool, free speech therapy, and BOCES. I can't say that these programs are a waste. Helping people who really need it is a good and moral idea. Helping diabled people contribute to society is a better one.

My wife had enough problems that it got her abandoned on a street in Korea at age 3. Now she works full time and makes $16/hr, despite not learning English until the 5th grade. I haven't had a particularly easy time, either, just being a little different (autism spectrum is what they call it now). My perspective is a lot different than most people. Listening to normal-intelligence people dump on disabled people with 30 fewer IQ points is particularly ironic, since there are plenty of people with 30 IQ points on them. It's relative. Society is built around the mean, so it's made for the average and above average.

How a society treats the disabled is the best indicator of what its values really are. America isn't particularly bad, all in all, but there are plenty of people who'd like to do away with deviance.

I've heard people say that our decision to have a child was a bad one, and we're creating a burden for society- despite the fact that we both work, pay taxes, etc. The idea that people are "burdens," when everyone who lives long enough becomes disabled, makes no sense. (There's really no point in arguing this logically. The proper response is "screw you.")

What it really means is that a lot of people are uncomfortable with the fact that disabled people, and disability, exist at all.