Friday, August 25, 2006

Thank you, Baby Doe

On April 9, 1982, a baby was born in Bloomington, Indiana. This baby lived only 13 days, but has significantly changed the lives of all of our children who are born with Down syndrome and medical complications.

Here is an article about "Baby Doe"

On April 9, 1982, a woman in a Bloomington, Indiana hospital gave birth to a son who was quickly diagnosed with Down syndrome, a chromosomal abnormality that produces mental retardation, and with esophageal atresia, the separation of the esophagus from the stomach, which rendered the newborn unable to absorb food.

The obstetrician who delivered the baby told the parents that their child would have only a 50 percent chance to survive surgery for his atresia of the esophagus, and that even if surgery were successful, their child would remain severely retarded and would face a lifetime of medical treatment, disability, and dependency.

He advised the parents to withhold treatment and let their child die of his birth defect. However, two other doctors, a pediatrician at the hospital and the family's physician, disagreed with the obstetrician's assessment of the newborn's prospects and called for immediate surgery.

Nevertheless, the parents decided that they did not want the baby treated. The hospital's attorney as well as outside attorneys, one of them representing couples prepared to adopt the baby, went to court to have him declared a neglected child under Indiana's Child in Need of Services statute and to have the court order medical treatment.

Indiana courts ruled that there was no violation of the statute, and that the parents, confronted with contradictory medical opinions, had the right to decide the fate of their child, soon named Baby Doe by the press. One of the attorneys appealed the case to U.S. Supreme Court Justice John Paul Stevens, but before the Justice could hear the case, Baby Doe died of dehydration and pneumonia on April 15."

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Hearing of this case, C. Everett Koop stepped in, and addressed the argument of quality of care for children with Down syndrome, stating, "the degree of mental retardation from Down syndrome was impossible to predict, and that it can range from mild to severe. Moreover, the quality of life enjoyed by a child with Down syndrome was greatly affected by the emotional resources of his family, by the level of community support, and by the availability of medical and education services."

Saying, "we ought to do things to give a person all the life to which he or she is entitled" he argued that children with birth defects and disabilities deserved fair and equal medical treatment, and to deny such treatment would be considered as greivous as denying it to an otherwise "normal" child.

In October of 1984, a law was put into place that made it illegal to deny fluids, nutrition, and medically indicated treatment for infants with birth defects, and mandatory for hospitals to report such cases, whether parent or doctor chosen, as neglectful.

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This law has probably saved the lives of countless children since 1984.

For me, personally, it really hits home, as Paige was born with Down syndrome and esophageal atresia. Our surgeon, and our neonatologists didn't for a moment consider whether surgery would be "worth it" because she had Down syndrome.

But, we've still got a long way to go. I wonder if "Baby Doe's" parents would have thought differently had a doctor not immediately told them that their child would be severely handicapped? Would they have taken the risk if they were told that there was no way to predict how his development would emerge if given the chance?

If the hospital had a standard policy of allowing parents of children with Down syndrome to contact them, and tell them what life with a child with Down syndrome was really like, would they have felt more hopeful? Would they have seen this child for so much more than his karaotype?

Yet, in 2006, more than 20 years after this case, obstetricians are still telling women that their child will be severely retarded when an amnio detects Down syndrome -- women are still being sucked into to the belief that it is the only right, just thing to do to abort their unborn child with T21.

Even in today's world, there are people who can justify the termination of these children by thinking they did what was best for their child. They convince themselves that their child "might have been" born with some horrific birth defect anyway, so terminating due to T21 was the thing to do.

Words like "suffering" from Down syndrome are still commonly used. We are encouraged to test, test, test with the goal of eradication if an imperfection is found.

23 and 24 week old "typical" babies are being born and saved -- 28 week old babies with Down syndrome are being killed in utereo, and then aborted. They must be killed first, as the risk of them surviving an attempted abortion is too great at that stage.

Women who are prenatally diagnosed are left to their own devices. Filled with fear, some just want to get it over with as quickly as possible...to run from that fear. Others will have the opportunity to research and speak to families living with Down syndrome.

What needs to happen is that obstetricians need to be better educated...they MUST learn about our children in a deeper way than just a medical diagnosis on paper -- they must utilize resources to give an expectant or new parent accurate, complete information that includes the good with the bad.

We need to understand that the worth of a person has nothing to do with 'cost effectiveness' -- as the theory is that children with disabilities are hugely taxing because of their sometimes tremendous medical bills.

How ironic that we don't argue the treatment of a person with lung cancer that has chosen to smoke for 40 years, or the revival of a heart attack victim who is 50 pounds overweight and drinks like a fish. How can this not be up for debate, yet my child, born gloriously to the world, with a very important message to deliver, is debatable?

Our society needs to recognize that true perfection in a person has very little to do with chromosomal count, or genetic make-up. Our perfection must come from within--from our ability to love and care for our fellow human beings--from our ability to make a difference in the world.

Baby Doe lived just 13 days. In that short time, he changed the world...he changed how people perceived him, and paved a way for more humane treatment of children that would come after him. His spirit and his soul was recognized as something worthy of fighting for. He may have very well saved my child's life.

I say anyone who makes that much difference in 13 days is certainly worthy.

Worthy indeed.

9 comments:

mum2brady said...

Great post Betsy. This subject weighs on my mind all the time. I was watching a special on the doctor and nurses being charged with killing patients during Hurricane Katrina with morphine overdoses and a lady came on and said who's right is it to play God and decide who's life is worthy of saving and who's isn't.... It brought me back full circle to the termination debate of children who are deemed "less than perfect". I wouldn't trade my beautiful little boy for anything, nor would I change him, if I could. He is perfect just the way he is :) as are Paige and all our kids!

Tara Marie said...

Betsy, thank you for writing about this....isn't it amazing how one child, whose precious life was very short on this earth, can impact the world.

I just love C. Everett Koop, what an amazing advocate for all human beings.

Tammy and Parker said...

Betsy,

When I first began Parker's blog it was to provide a way to let friends and family know what was going on and how he was doing.

But as time went on my focus changed. I remember reading the statistics on how many babies who have received a prenatal diagnosis of Ds are aborted. And one of the main rationals behind the abortions? The health risks.

My focus then changed to educating people not only of the worth of a child with Ds, but the worth of a child with Ds who also happened to draw more than his fair share of health issuses along with that extra chromosome.

I realized that if I never wanted to talk about Parker's imperforate anus, or the fact that he wears an ostomy bag that there may be those who would interperate that as me being embarassed. Or if I let my fear of the potential outcomes of his PH scare me into not sharing our experiences with it that I might miss an opportunity to express the joy that comes from the journey as well.

I also know that painting a picture of nothing but roses would also give cause to people thinking I was living in my own La-La Land.

So I have chosen to blog on life with a medically fragile baby who also has Ds. I want to let others know that if I had the change to do everything all over again, that not only would I whole heartedly chose to bring Parker into our family, I wouldn't change one little thing about him. I want people to know how thankful we are for him and loved and wanted he truly is.

Nicole said...

Love you Bets! So well said, as always. Did you know Jan worked on the Baby Doe case? I think she was an intern. Life is odd huh?

mum2brady said...

p.s. you've been tagged :) Come play the Pizza Box Meme. Check out my blog for info :)

Debra said...

Wonderful post thanks for sharing your thoughts.

Hugs from Debra and Hope

Awesome Mom said...

Wow, great post. I am glad that my son's heart defect was not discovered before he was bron because I know that there could have been a push to have him aborted due to its severity. He is such a blessing in my life and he is enjoying a wonderful quality of life that it makes me sad to think of the people that would have wanted to deny him this.

Camille said...

I am kind of my own person. I would not let myself be pushed to go through wierd testing because of my age. I thought who am I to decide the faith of someone else??? But then again, what if they would have convinced me to have the test. Would I now be enjoying Emma so much. Maybe, maybe not... Thank God I followed my inner voice... How could we all sing to the world the joy our children bring us and others...How about a song with Neil Young, (we are the world) with a bunch of other rock singers, and in the background videos of families like ours showing the world how happy we are...

pretty_angelina said...

my baby was born with esophageal atresia.. God has the solution for us.. for there are doctors who are willing to help for free.. a series of four operation. now my pretty angelina is going four years old now. praise God.