Wrongful birth: Parents sue over doctor’s ‘mistake’

From Wesley J. Smith, who has moved his Secondhand Smoke blog to First Things, comes the story of an Oregon couple who are suing because a test during missed that their child had Down syndrome. Had they known, they would have aborted the child. From the story:

In the months before their daughter was born in 2007, Deborah and Ariel Levy worried the baby might have Down syndrome. They say a doctor at the Legacy Center for Maternal-Fetal Medicine assured them that a sample of tissue taken from the placenta early in the pregnancy ruled out the developmental disability, despite the results of later testing that showed the fetus might have it. But within days of the birth of their daughter, the Southwest Portland couple learned the baby did have Down syndrome. Had they known, they say, they would have terminated the pregnancy. Now they’re suing in Multnomah County Circuit Court, seeking more than $14 million to cover the costs of raising her and providing education, medical care, and speech and physical therapy for their daughter, who turned 2 this month. The suit also seeks money to cover her life-long living expenses.

In the story the parents, who declined to be interviewed, say they love their daughter as much as her older siblings. Yet they are also aware of being seen as heartless for wanting to sue because she was born instead of being terminated by abortion. There is an indication that there is something in these people’s souls that tells them what they were seeking was wrong — after all, they realize that killing the child is a heartless act, at least in the eyes of some. However, the idea that suing for a botched test, even if that test would have led to something like killing your own child, supersedes  their moral hesitancy.

Even with tests that are highly accurate, there is no guarantee that parents can definitely know whether their child will have Down syndrome or not. It is not about botched tests all the time. Sometimes you just can’t tell. But where science or medicine falls short, others can step in. Instead of covering doubt with abortions or recommending abortions, perhaps doctors should be pointing parents to places that can help them cope with life with a Down child. In the Oregonian article, a word of hope and of caution is sounded:

The Northwest Down Syndrome Association in Portland encourages doctors to send parents expecting a baby with Down syndrome to her organization, said Executive Director Angela Jarvis-Holland, because it is equipped to answer questions about what life will be like.

“Because what constitutes a good life?” Jarvis-Holland said. “I don’t think doctors can answer that in a two-minute conversation.”

Prenatal tests can’t discern the severity of Down syndrome, and it varies widely by individual. Jarvis-Holland said involved parents with the right resources can greatly improve their child’s development.

She said the ability to test for a growing array of conditions means many more women will be faced with the question of whether they want to be tested for everything from autism to an alcoholism gene (tests are in the works), and what they’ll do if the results come back positive.

“Down syndrome is really the canary in the coal mine,” Jarvis-Holland said. “It will be everybody’s question before we know it.”

Jarvis-Holland, who has a 10-year-old son with Down syndrome, worries about what she calls the “tyranny of perfection” if parents one day will be able to test for virtually every conceivable disadvantage facing their fetus.

“If you keep growing the list, where and when do we grow uncomfortable about that list?” Jarvis-Holland said. “I’m not sure where this is taking us.”

HT: Zach Nielsen

The chilling words recounted

ultrasoundGretchen Naugle, wife of Desiring God resources director Lukas Naugle, recounts at A Beautiful Work a disturbing episode in her life:

This month marks a strange anniversary of sorts for me. It was 2 years ago this month that I was sitting in a chair looking at my unborn baby in 4D. She was precious! We had previously found out that our baby had several “markers” for down syndrome and had enlarged kidneys which may have required surgery upon birth. Thus we were monitored more carefully and had a ton more ultrasound shots at a hospital. This was the first level 3 ultrasound with this pregnancy (I had had one with my 3rd with no problems). I got to gaze upon my baby for almost a full hour – it was wonderful! I was there alone as my husband was out of town. The specialist doctor called me in after the ultrasound to go over the findings. The first words out of his mouth to me were “Well you will have to come in tomorrow for your abortion because of how far along you are.” I was utterly shocked and devastated. All I could do was mutter “What??????” He then proceeded to tell me that my baby had more “markers” for down syndrome and it didn’t look good. I was more shocked that his automatic assumption was that I would abort my baby. I almost couldn’t comprehend what he was telling me in that office. All I wanted to do was run as far away from that man as possible.

Read the rest of the post to see that, unfortunately, Gretchen’s encounter is not that uncommon for women with babies diagnosed with Down syndrome.

What is so appalling about Sarah Palin?

I have read more than once, from various sides of the political spectrum, how appalling John McCain’s choice of Sarah Palin as his running mate was. Perhaps they may have reasons, although I will point out that any serious student of presidential history will see that Sarah Palin is no less experienced than many people who served capably as president of this country. But appalling? Here is video of what kind of character Sarah Palin has and the nerve she has touched for one segment of our society.

I guess I can’t really understand that hatred that is being directed toward this woman. Perhaps it’s easier for people to direct that hatred toward her rather than come right out and say it’s Down syndrome people they really hate. Or, rather, would not want to see live in the first place. That is what is appalling.

The hard life of living with a Down syndrome child

My precious niece Amelia is popular with my two children.
My precious niece Amelia is popular with my two children and all of our family.

The Washington Post did a front-page story this past Sunday on what it’s like to live with and raise a child with Down syndrome. For those who haven’t been through it, it is an eye-opening look into what is a very difficult life.

Articles like this, of course, are being written because of the attention that Alaska Gov. Sarah Palin has brought to families who have Down syndrome children. These children are all around us, but, as one of the parents in the story says: “Before, kids would stare, but not adults. Everybody’s curious: ‘What’s it like to have a kid with Down syndrome?’ ”

What’s it like for these families is put this way in the article:

Amelia is a blessing to all of our family and to those who meet her.
Amelia is a blessing to all of our family and to those who meet her.

They spend more time in doctors’ offices than most parents. They endure stares from strangers but feel as if they and their children are invisible. They often find themselves fighting for their kids, not just raising them. Earlier, and perhaps more dramatically, they wrestle with the complex emotions that come from knowing that a child might never fulfill the lofty dreams that a parent often envisions before the child’s birth.

But the parents of children who have Down syndrome say that raising a child with a disability can also unlock profound and uplifting truths about themselves, their children and the value of life in ways that others could never see.

In our family, we have a beautiful gift from God named Amelia. She was born with Down syndrome to my wife’s brother and his wife to join their other three children. At age 2 she is still learning to stand on her own and maybe utters a handful of words, but she is world class in drawing tenderness from anyone who encounters her. It is a hard life for her parents as she has needs that press daily on them and her family, but I don’t doubt for a second that they love her every bit as much as her older brothers and sister.

One of the parents in the Washington Post article recounts an encounter with her sister that is a cruel reminder of how many in our society think the cruelest thoughts when it comes to Down syndrome children:

“My sister looked at me and said, ‘Why didn’t you abort her?’ ” Marsili recalled. “I said, ‘What? Because we love her, and she’s my baby, and we love her!’ ‘But you knew,’ my sister said. . . . It was pretty shocking. Even people that close to me.”

It is a dangerous place we’re at when we consider killing to be a solution for children who’s abilities are diminished. If it takes someone like Sarah Palin entering the spotlight for us to expose this kind of thinking — and rebuke it — then I think it is a good thing.

FOR FURTHER INFORMATION:

National Association for Down Syndrome

National Down Syndrome Society

HT: Wesley J. Smith

Today’s new eugenicists

Of the blogs I look at regularly, one that I have often visited and am often enlightened by is Wesley J. Smith’s Secondhand Smoke. Smith says his blog “considers issues involving assisted suicide/euthanasia, bioethics, human cloning, biotechnology, and the dangers of animal rights/liberation.” There are a lot of issues he deals with that are not isolated to the world of science but rather intersect with our lives every day.

For example, the whole furor around the nomination of Alaska Gov. Sarah Palin to be vice president by John McCain has brought to the forefront the issue of Down syndrome children and the divergent views about whether people should knowingly give birth to children with this condition. I have already given my views on the subject on this blog, but there are certainly those who disagree as seen just by comments posted here.

Physician and writer Rahul K. Parikh gives what by all appearances is a concerned response to Palin’s decision in an article in Salon:

By knowingly giving birth to a Down syndrome child, Palin represents a minority of women. A 2002 study found that about 90 percent of pregnancies in the United States where the fetus was diagnosed with Down syndrome were terminated.

Rabid anti-choice activists have called that trend eugenics via medicine. But try telling that to a mother who is told early on in her pregnancy that she will be raising a child who will have a host of medical and developmental problems, requiring intense medical and social attention for the rest of his or her life. It can be tragic and nearly impossible news to bear.

Kids with special needs require and deserve intense therapies and attention to their needs. That’s likely something Palin, with her political and social stature, can afford both financially and emotionally. But that may not be the case for other families, who have to struggle to balance work with home and family. They simply may not be up to the challenge of raising a child with Down syndrome. Sadly, kids with developmental problems like Down syndrome are at a higher risk for being abused by parents and other caregivers.

And if you can’t provide that, what should you do? Well Parikh doesn’t say, but by labeling Palin “anti-choice” gives the reader a pretty good idea. Yes, let the mother choose, but not the child. Of course it seems compassionate to consider the poor mother and family of a Down syndrome child and what they will have to face. Smith addresses such “compassion” in an article “Waging War on the Weak” that he wrote for the Discovery Institute:

(The “new eugenics”) perceives some lives as having greater value than others, and which in some cases sees death—including active euthanasia and assisted suicide—as an appropriate “solution” to the problems of human suffering. The original eugenics movement expressed this relativistic view of human life through hate-filled rhetoric; for example, eugenicists described disabled babies like Miracle in terms that today would be considered hate speech. Thus, as recounted in Edwin Blacks’ splendid history of eugenics, War Against the Weak , Margaret Sanger took “the extreme eugenic view that human ‘weeds’ should be ‘exterminated.’”

Today’s new eugenicists are not that crass, of course. Indeed, rather than screaming hate and pejoratives from the rooftops, they instead ooze unctuous compassion as they croon about a “quality of life” ethic and preventing the weak—against whom they are secretly at war—from “suffering.” But behind the politically correct language, and indeed, hiding within the hearts of those who perceive themselves as profoundly caring, lurks the same old disdain of the helpless who offend because they remind us of our own imperfections and mortality.

This kind of thinking is subtle but deadly. Smith does a great job of exposing this kind of thinking in his blog. Are these issues important or is this just a big fuss over little things? No, not when you consider that health care is a major issue in this election.

Mother’s Day and the Culture of Death

Trig Paxson Van Palin

This coming Sunday is Mother’s Day, and we will take time out to honor the people who mean so much in our lives.

And while we will spend a lot of money and energy honoring our mothers, there will be those who will have great discomfort on this day. Some will be reminded that they had children and instead chose to end their lives through abortion. But we know that God is merciful and that there is forgiveness of sin and there can be restoration to those who come to him through Christ. After all, we are all tainted before him.

The picture included in this post is of Trig Paxson Van Palin, whose mother Sarah will be especially happy on this Mother’s Day. You see, Trig was born April 18 to Sarah and her husband Todd. Besides being a beautiful baby boy, he was also born with with an extra chromosome, which means he has Down syndrome. Albert Mohler picks up the story

The Palins never considered aborting the baby. That means that Trig Palin is now is a very rare group of very special children, because it is now believed that the vast majority of babies diagnosed with Down syndrome before birth are being aborted.

Modern diagnostic tests are driving a “search and destroy mission” to eliminate babies judged to be inferior, disabled, or deformed. Some experts now believe that up to 90 percent of all pregnancies diagnosed as having a likelihood of Down syndrome end in abortion.

Back in 2005, ethicist George Neumayr commented: “Each year in America fewer and fewer disabled infants are born. The reason is eugenic abortion. Doctors and their patients use prenatal technology to screen unborn children for disabilities, then they use that information to abort a high percentage of them. Without much scrutiny or debate, a eugenics designed to weed out the disabled has become commonplace.”

These kind of stories catch my attention because, first of all, I do not want to see any child’s life ended through abortion. Secondly, in my own family we have been blessed with a special child with Down syndrome. People like the Palins and my brother-in-law and his wife are heroes to me because they stand in the face of what our society tells us is right — that these children have a life that is not worth living.

So, be thankful for your mother and love this coming Sunday. But also love those around you. People who have made mistakes and now regret them. People who don’t understand but still need love. People who are living difficult lives but who are witnesses that God is great and we are all needy people.