RE: Re: Happy Birthday, Baby Doe (this is not a 'happy' birthday article, but a necessary one, imo)

[Guest guest]

"Deformed fetus" doesn't seem accurate to me, don't know if it is PC. I don't see kids with Ds as deformed, although they do look unique.Faith at 12 recognizes people and kids with Ds. We were at the mall and there was a group there with an ARC supervisor. A young man with Ds opened the door for us and bowed a little. Faith said "?" I said no, but he looks like . So Faith asked his name and they had a little conversation, then, of course, hugged good bye. Later she saw another person with the group and asked me if she had Ds. I told her "no, but she does seem to have a disability." Apparently Faith is struggling with a common misconception that any person with a disability has Ds.etteTo: DownSyndromeInfoExchange From: margie.doyle@...Date: Tue, 13 Apr 2010 18:56:18 +0000Subject: [DownSyndromeInfoExchange] Re: Happy Birthday, Baby Doe (this is not a 'happy' birthday article, but a necessary one, imo)

Just curious as my son is young and all the emotions that go along with a beautiful child who happens to have DS are new to me...

When I heard this story on WGN radio this morning they referred to "the deformed fetus" being the one that was meant to be aborted...this reference hit me very offensively, are they "politically correct" or am I right with my feelings here... and there arent adequate words to express how I feel about the actual purpose of procedure, or the procedure alone, so I wont even attempt....

> >

> > Parts of this article are upsetting, but the story needs to be told,

> > imo..if we close our eyes and turn away to avoid being upset , even more

> > babies will die. Mark Leach is an untiring advocate for people w/Ds-in

> > particular for unborn/newborns with Ds.... and has written a very compelling

> > article. Please read it, pass it on to others,...please speak up however you

> > can in your own communities (and online) to educate society about Ds, so

> > that hopefully, babies won't be denied life based on a misunderstanding of

> > what their lives would be like. Even letting people know that there is a

> > waiting list to adopt a child w/Ds might help. Not everyone can raise a

> > child w/Ds, but *someone* could, and is waiting for the chance. What is so

> > sad is that these parents probably truly thought that they were being kind

> > and loving to 'allow' their son to die, based on the information they got

> > from their doctor.

> > thank you

> > KathyR

> >

> >

> > http://www.courier-journal.com/article/20100409/OPINION04/4090306/1054/OPINION/Mark+W.+Leach+|+Happy+Birthday++Baby+Doe<http://www.courier-journal.com/article/20100409/OPINION04/4090306/1054/OPINION/Mark+W.+Leach+%7C+Happy+Birthday++Baby+Doe>

> >

> >

> > By Mark W. Leach • Special to The Courier-Journal • April 9, 2010

> >

> > Twenty-eight years ago today, in Bloomington, Ind., a baby boy was born.

> > Though his parents may have given him a name, that child became known as

> > "Baby Doe." Why "Baby Doe"? Because that is how the lawsuit filed after his

> > birth referred to him.

> >

> > What did Baby Doe do to start a court fight? Nothing, exactly. He entered

> > the world without his esophagus connected to his stomach — a condition that

> > can be repaired, and with a 90 percent success rate. The lawsuit started

> > because of the reason his condition was not treated.

> >

> > In addition to having a repairable condition, Baby Doe was born —

> > conceived, in fact — with Down syndrome. The parents' physician, Dr. Walter

> > Owens, advised that they could choose to do nothing about treating their

> > child's esophagus. Although this would result in Baby Doe's death, Owens

> > relayed how some children with Down syndrome were "mere blobs." Based on

> > their doctor's advice, the parents chose to withhold care.

> >

> > Attorneys for the hospital and for families wanting to adopt Baby Doe sued

> > for court-ordered medical treatment. Owens testified, as did another doctor,

> > who directly contradicted Owens, saying that care should be provided to this

> > living human being who had a non-terminal condition.

> >

> > Meanwhile, Baby Doe was sent off to a corner in the hospital's nursery. His

> > lips cracked from dehydration. Doctors tried to intervene, but Owens blocked

> > them — even physically — from rendering care to Baby Doe.

> >

> > The judge ultimately ruled that because there was a difference in medical

> > opinion, the parents were within their rights to choose to withhold care.

> >

> > The disconnected esophagus caused Baby Doe's stomach acid to bleed into his

> > lungs. He spat up blood. Six days after being born, Baby Doe died.

> > I heard this story four years ago while on a shuttle to Kansas City's

> > airport. I had just attended the first Down Syndrome Affiliates in Action

> > (DSAIA) conference. Being a lawyer, I was ashamed at the idiocy of that

> > judge — under his ruling, if doctors did not agree, that constituted a

> > difference in medical opinion, regardless of how unreasonable Owens' medical

> > opinion was. Being a father to a daughter with Down syndrome, I was enraged.

> > But I thought — or hoped — that such abuse could not persist today. Not in

> > this age of acceptance of diversity, respect for human rights, and political

> > promises that health care is a right.

> >

> > Then I read about the Groningen Protocol. In 2005, physicians in the

> > Netherlands formalized a practice for not just withholding care but actively

> > causing the death of infants born with disabilities. Some of its first

> > victims were babies born with Down syndrome.

> >

> > And 2009 closed with the publication of a Russian article entitled "Finish

> > them off, so they don't suffer." The author argued that parents should have

> > the right to "post-birth abortions" for those children they do not want

> > because of the child's disabilities. In an interview, he stated, "I don't

> > want a baby with Down syndrome," and that he should not be stopped from

> > avoiding having one, even if that child was breathing in the next room in a

> > nursery.

> >

> > The Russian columnist is not alone in his views. Here in the United States,

> > Princeton University bestowed its first professorship of bioethics upon

> > Singer, a man who has espoused similar, if more nuanced, views about

> > the right to postnatal killings in the case of disabilities.

> >

> > Of course, the Russian column and Singer's views are just that: opinions.

> > Owens and the Groningen Protocol actually act upon the view that certain

> > lives are not worth living.

> >

> > While we would like to think that Owens is from a distant, ignorant past;

> > that the Russian columnist is a crackpot half a world away; and that Singer

> > is just a voice from the Ivory Tower, here is a very real story that

> > happened, and continues to happen, in this world today.

> >

> > In March 2010, DSAIA returned to Kansas City. This year, international

> > attendees included Bala Mohammed, the leader of a local group in Nigeria.

> > His tale makes Baby Doe's treatment look humane.

> > Bala has a niece with Down syndrome. He told of how, culturally, his niece

> > was considered a curse, but his sister refused to accept such a notion.

> > Instead, she chose to keep her baby, and now her daughter is flourishing.

> > However, Bala shared the fate his niece easily could have faced.

> > A local sanitation worker showed up to work one day to burn a garbage heap.

> > The worker approached the trash pile and was about to light it ablaze, but

> > he stopped. He stopped because he thought he heard a moan. He saw a burlap

> > bag resting on top of the trash pile and, when he opened it, he found inside

> > a toddler — a little girl with Down syndrome.

> >

> > Twenty-eight years after Baby Doe was born and Owens advised his parents to

> > let him die from neglect, a child was put in a sack and left on a trash heap

> > to be burned to death. What's more, physicians in the Netherlands, a

> > columnist in Russia and an Ivy League professor would say that the little

> > girl's parents were within their rights.

> >

> > On this anniversary, we would like to think that the world and people's

> > understanding of Down syndrome has changed, but clearly, that isn't always

> > the case. So we are left to wonder, what can we do to ensure that the next

> > Baby Doe born will have the chance to live and see his or her birthday?

> > Mark W. Leach is an attorney in Louisville. He serves on the board of

> > directors for Down Syndrome of Louisville and Down Syndrome Affiliates in

> > Action. The views expressed are his own.

> >

> >

> >

> >

>

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