Passing Up on Down Syndrome

[Anita S. Lane]

*News Flash*
The latest research shows that the number of babies born with Down Syndrome is declining. What could possibly be the reason for this decline? Is it scientific advancement? Is it something different in parents or the environment? To what should we attribute this phenomenon?

We can attribute this phenomenon to the words, “No thanks, I’ll pass.” Or put more bluntly, abortion…and our society’s Perfect People Patrol mentality. Don’t stop here because I mentioned the “A” word. The rest is worth reading…

According to hospital studies, about 90% of women in the U.S. whose babies are diagnosed with Down Syndrome, terminate their pregnancies. (PubMed.gov) And while only pregnant women 35 and older have traditionally been tested to determine if their unborn child has Down syndrome, the American College of Obstetricians and Gynecologists, now recommends that all pregnant women, regardless of age, be routinely tested.

In the UK, British women are increasingly “eliminating their unborn children because of non life-threatening deformities such as deformed feet or cleft lips and palates” and “more Down's Syndrome babies are now killed than are allowed to be born.” (LifeSiteNews.com)

When I first learned of these statistics I didn’t believe them. The numbers were staggering. “It couldn’t be true. It must be a misprint,” I thought. But I was very wrong.

Where Have All the Down syndrome Babies Gone?
According to George Neumayr, the executive editor of the American Spectator, “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.” (The American Spectator).

Medical researchers estimate that since 1989, 70% of Down-syndrome fetuses have been aborted—along with a high percentage of fetuses with cystic fibrosis, spina bifida and Tay-Sachs. It appears as though the “New Eugenics” is in effect and many are concerned as to where it will lead. Some experts are paving the way. Princeton professor Peter Singer, has stated that, "It does not seem quite wise to increase any further draining of limited resources by increasing the number of children with impairments."

Bob Edwards, the embryologist who created the first test-tube baby through in vitro fertilization, has stated that, "soon it will be a sin of parents to have a child that carries the heavy burden of genetic disease. We are entering a world where we have to consider the quality of our children."

According to Neumayr, “In essence, the “right to abort a disabled child, in other words, is approaching the status of a duty to abort a disabled child. Parents who abort their disabled children won't be asked to justify their decision. Rather, it is the parents with disabled children who must justify themselves to a society that tacitly asks: Why did you bring into the world a child you knew was disabled or might become disabled?” (http://www.spectator.org/dsp_article.asp?art_id=8418)

My Story
My youngest child Joshua (shown above) was born with Down Syndrome, a condition that replicates a critical portion of the 21st chromosome in other cells in the body. This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome. In Joshua’s case, it was unofficially diagnosed before he was born and confirmed through genetic testing after his birth.

Joshua is an energetic three year-old who exudes love to everyone he meets. He really is thoughtfulness personified. He brings immeasurable joy and laughter to our family—as well as some pretty big messes and spills. Joshua gets a big kick out of making others laugh and finds joy in comforting others when they are sad. He loves swimming and “reading” books (i.e., holding books while uttering various syllables). We like to joke that he’ll grow up to be a comedian.

The Most Common Genetic Disorder
Today, Down syndrome is the most common genetic condition with one in every 800-1,000 children born with it. Down syndrome is the most studied and well-understood genetic condition. Government sponsored programs and services abound, as well as support groups for families. Individuals with Down syndrome are also living longer than they used to. It’s safe to assume that if 90% of Down syndrome babies weren’t being aborted, the number of children born with Down syndrome would be much greater.

While many doctors discourage the birth of Down Syndrome babies—whether knowingly or unknowingly—the truth is, individuals with Down syndrome possess varying degrees of mental retardation, from very mild to severe, and most people with Down syndrome have IQs in the mild to moderate range of mental retardation. If more expecting moms and dads understood Down syndrome—and knew the possibilities that existed for their unborn child—I really believe that far fewer parents would choose to abort.

Opportunities Abound
Inclusion of individuals with Down syndrome in typical classroom settings, community organizations, work forces and social and recreational activities now occurs regularly.Often, doctors feel obligated to present pregnant women with the worst case scenario and stress the difficulties of life with a “disabled” child. But before we assume the worst, let’s examine the facts and explore the possibilities:
· The majority of Down syndrome babies are well functioning members of society. They attend school, hold jobs, and now, are beginning to be assimilated into college.
· Down syndrome is the most commonly occurring genetic condition. Today, Down syndrome affects more than 350,000 people in the United States.
· Eighty percent of children born with Down syndrome are born to women younger than 35-years-old. However, the incidence of births of children with Down syndrome increases with the age of the mother.
· Today people with Down syndrome are active participants in the educational, vocational, social and recreational activities of the community and live in group homes and other independent housing arrangements.
· Businesses are seeking young adults with Down syndrome for a variety of positions in banks, corporations, nursing homes, hotels and restaurants, music and entertainment industry, in clerical positions and in the computer industry. People with Down syndrome bring to their jobs enthusiasm, reliability and dedication.
· People with Down syndrome date, socialize and form ongoing relationships. Some are beginning to marry. Women with Down syndrome can and do have children.

Perfect People Only—Where Will It End?
The problem I have with the deep, dark, downward spiral of aborting “imperfect babies” is that tests are fallible. I happen to have five female friends who were told their child had Down syndrome, but the baby was born completely normal.In today’s society, where more and more couples are having difficulty conceiving a child or waiting later in life to conceive, it would be very unfortunate for these parents to forego what might be their one and only shot at having a child. Modern technology is never one hundred percent accurate.

Furthermore, will the deep, dark, downward spiral of aborting “imperfect babies” eventually span to include children who are later discovered to have autism or some other rare debilitating disease? What happens then?

Imperfection—an Inconvenient Truth
While the aforementioned line of questioning may seem extreme, it probably seems extreme to our creator that we would go through such efforts to eliminate a child whom we feel poses an inconvenience upon our lives.One day we may wake up to find the Perfect People Patrol strolling the halls of prenatal clinics and birthing wards to encourage proper disposal of society’s “undesirables.”

Insurance companies will have a “pre-existing condition” clause prohibiting health coverage of children with disabilities detectable in the womb.Individuals living with recognizable disabilities and their parents will be mocked and looked upon with scorn for having the audacity to give birth to an imperfect child.

The law will allow pre-selection of gender and other desirable traits and parents will finally have the opportunity to create the “perfect” family—literally. That is, until we open our eyes and realize that none of us is perfect.Everyday PeopleThe simple, yet profound truth is that there is no perfect human being—even if you have all of your faculties and you’re not cognitively impaired—and the more we try to create one, the more we will become as a dog chasing its tail. Each person on the face of the earth has value—and it’s not determined by his or her fellow citizen. It is innate and God-given.

Living with a disability, or having a special needs child is not easy. At times it may seem flat-out unbearable. Yet living with and among people we consider “disabled” has the potential to make us more loving, patient and compassionate individuals.

As a society, let us be careful not to morph into a Perfect People Patrol, who want to reduce the number of individuals they consider an “unproductive” drain on precious resources. May we learn to live amicably with all people—even with all our faults, challenges, disabilities and imperfections.

Let us allow everyone in our society to live up to his or her full potential and leave his or her mark on the world. In the process of embracing our “imperfections,” I believe each of us will evolve into a more “perfect” person.

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Learn more about Down syndrome. Visit the National Down Syndrome Society http://www.ndss.org/

Also check out this great article in the New York Times. There are video clips as well. http://www.nytimes.com/2007/05/09/us/09down.html?fta=y

[JA]

Thanks Anita. Enjoying your posts and articles.

[Anita S. Lane]

JA,

Thank you so much for your detailed response. You're one incredible woman. You and your husband do more than "talk the talk" when it comes to being our "brother's keeper." You know, all we can do is do our part. I commend you for doing yours. Stay encouraged!

Anita

[JA]

Hi Anita,
The first part of my previous comment was erased. My apology.
I am very inspired by your story and article. There is much to consider. Please know I meant to preface the previous entry with the following:
In high school many peers, supposedly "perfect people" often dismayed or disenchanted me. I had the priviledge of hanging out with the special ed group at certain times. I was introduced by Mike, our neighbor, who was in the same class. The experience was heartwarming; they were regularly accepting, compassionate, loving and fun. Sometimes I believe they are the reason I made it through those days.
On the other hand, I was aware of the struggles of my friend's siblings and family with him. I never knew quite what to make of it as at times their frustration was very apparent.
Our generation is having children much later. I have several girl friends with new babies and so far all have been without Down's. The fact that some are identified as Down's and when born without characteristics or defect is noteworthy. Can more test be done to confirm?
I hope our society is more evolved & tolerant. I remember some high schooler's often being not so nice to the special ed kids. I told several people to just leave them alone if they couldn't be kind.

[JA]

Hit the wrong button...
A PPP would be disasterous. That's not a world. We're getting too homogenized already. In these discussions it seems that the middle ground disappears. The options disappear.
Meeting and spending time with children who have these attributes might be eye opening. Why don't doctors facilitate the opportunity?

Yet, without the abortion option we might force generations of people into a less than ok life position. Forcing a couple incapable or unable to cope with the problem could be equally disasterous.

We need to be equally vigilant not to lose the right to choose. The other side of the senario is a state dictating that a woman will have a (Downs) baby because the world need love. We each individually need the option to decide if we want to have a child (with Downs) or not.

From a personal perspective I have the children I was supposed to have. I always said I would adopt children rather than have my own ( reasoning: there are millions of kids that didn't ask to be here (have you seen the prostitution rings of little girls in some 3rd world countries? The desperate point is that they are better off because at least they get to eat); I feel its selfish and short sited to have children because it just happens (this possibly devalues a child from the get go), a woman falls prey to thinking "oh will I be sorry? ", religion doesn't allow it, etc). How many people are on welfare and in special programs because of poor parenting? Ultimately, in highly populated countries human life becomes degraded and devalued because its all too much and people can't or stop caring? We need to look at this. What is going to happen to all the children born into the Meth Culture? What's going to happen to our society? How will that impact your child?

We adopted our children at 11 & 14 out the drug culture in an emergency. They had behavioral problems and socialization issues. We have always loved them. They are our kids. Did we have a choice? My husband and I could have said no and had to live with our decision. Yet we were close, watching & waiting. Our hands were tied for years. These children were born to parents who 1) became pregnant under the influence & 2) chose to have them in a haze. Its been intense and very life changing. Unfortunately, they'll be the ones deal with the real consequences of their parents choices. We can not save them from the responsibility of their own lives. One parent is dead and one went to prison. The surviving parent is better and making a new life. This is good for the children as long improvement continues. We have grown and stretched and fought for them in ways we never anticipated. If we had known the magnitude of what was ahead, we may not have made the choice to take them on. Can't be certain. Fortunately, they are doing relatively well now and we are starting to know we are making a difference for them. We've had them for about 5 years.

I'm all for helping a child that has come to the planet without a choice and is in a bad situation if able. What I can't figure out is why abortion is such a (religious) hot button and allowing children into a war theatre seemingly acceptable to some?

One thing is important: just because one person does well with a given set of life issues doesn't imply that the next person has the same experience. Everyone has their own abilities, responsibilities and path to navigate.