Bruce Campbell | Jul 3, 2007

It's pretty obvious that this is an attempt to facilitate terminations, and I completely agree that the only way we don't evolve a culture of "vanity babies" is to present the full range of life possibilities so that no one is devalued. I'm less concerned about the declining numbers of DS -- that's always struck me as an odd concern, though I understand the implications of it -- than the more pernicious outcome that we're devaluing the range of humanity. The more this happens, the more certain people become inherently undesirable, and I don't think anybody wants to live in that world, even the abled. We probably do need to dial up our efforts to get into practices and into hospitals.

Alice Elliott | Jul 3, 2007

This is a very timely and important discussion. I'm interested in it from the ethics point of view. I'm a filmmaker and think there is an important story here.

Please keep me informed or contact me. director@welcomechange.org. My website www.welcomechange.org

Sheryl Frishman | Jul 5, 2007

What concerns me most about this is not that this test is being offered, I personally believe that it would be better for an expectant parent to be prepared for a life with a developmentally disabled child instead of being shocked at birth or at diagnosis and not know where to turn.

However, if it is true that physicians are not passing information on to expectant parents on both the pros and cons of having a child with Down Syndrome, this is troubling. Physicians should pass on unbiased information to expectant parents and have on hand phone numbers of organizations and contacts like Westchester Arc, so a parent can understand the diagnosis fully. Maybe Westchester Arc should do a mailing to the local OB/GYNs (and encourage other Arcs to do the same in their area) and let them know that they are here for their expectant parents grapling with this.

Rita | Jul 6, 2007

Medical Technology has give us the abilility to make critical decisions....be it a personal risk, multiple births or the birth of a child with a disability. The diagnosis can bring forth the necessity for indepth research, family involvement as well as strong support from family members of a worthy organization. Ultimately, the information and awareness would ease the decision making. I can only see a positive outcome when one takes an intelligent approach and is well thought out (as difficult as this might be).

Lisa | Jul 9, 2007

Rita, it's impossible to make an informed decision when given (what seems to be) devastating news, without any ray of hope. When my son was diagnosed prenatally, I met with the geneticist at 9:00 am to inform me of the facts--low tone, mental retardation, poor speech, etc. etc. Then, around noon, the OB/Gyn spoke with my husband to tell us that he was at the hospital that day and we could come for an abortion. I decided not to take that route, and subsequently met many families with adorable children with Down syndrome during my pregnancy. Had the physician offered to put me in touch with a family to find out what life with a child with Down syndrome was like, I would have been able to make an informed decision. Most physicians have NO IDEA what it really means, and have the same stereotypes (if not worse) than the general population. One positive I see, however, is that with the new testing, the parent is informed much earlier (in the first tri-mester, I believe). This could mean that there is not such a hurry to terminate the pregnancy, and the parent may have more time to consider.

One more thing: we owe it to parents to let them make an informed decision, not just scaring them into an abortion. Because, life with a child with Down syndrome is a rich, wonderful, rewarding and laughter-filled life, and many people will live a lifetime of regret when they realize the blessing they chose not to have.

V. | Jul 9, 2007

As the parent of a child with Down syndrome there haven been some very good days, some very sad days, and many, many very ordinary days. We deal with issues of health, education, and life planning at much earlier stages than the so called "normal" population does. We worry about what will happen to our children when we are gone and who will love them and care for them as we do. However, when you stop and think, is this so different from what all parents go through in lesser or greater degrees?

The biggest difference between children with Down syndrome and those without is that we are aware that there is a difference! And with this knowledge we have a measure of control over events. I know many parents of typical teenagers who deal with far more complex and heartbreaking issues than I have ever dealt with. I doubt I would trade them problem for problem.

The crux of the problem seems to be how and whom will enlighten parents that carry a child with a disabilty? Enlighten without judgement. Enlighten without sugar-coating or emphasizing only the negative. This is not just an issue for DS. This is an issue for all society...how or should we decide what are desireable physical traits or how smart is smart or how different the individuals in a society can be? We cannot close the door and pretend that those choices are not available - the ability to choose is what makes us human. Perhaps what we need to learn is how to be more accepting of each other and take the higher road to what ever lies around the bend.

Guy Colas | Jul 9, 2007

If termination was not an option, we would not be discussing this topic.It is a shame that we are attempting to choose above God's will who should and should not come into this world. I have a child with DS and I wouldn't give the world for him. All children whether disabled or not are part of God's creation and he loves them equally.

Anonymous | Jul 10, 2007

I agree that this is yet another move by the medical community to offer the opportunity for aborting a presumedly "less than perfect" child- a sad move when we admit that none of our kids are "perfect." Rather than increasing testing there is a more pressing need for doctors to be better informed about what a baby with Down Syndrome means and how to accurately represent this to new parents. The first statement should be that they are more like "typical" children than they are different. I am astonished at the misinformation which is still being so irresponsibly dispensed in this day and age. I urge all mothers of children with Down Syndrome to bring their children with them to doctor visits- you never know who will be in the waiting room and whose life it could save.
When people realize what this diagnosis really means they are often less inclined to make the terrible and rash choice to terminate.

As parents, we also should make ourselves available to other newly expectant parents- offer your name and number to your ob/gyn to give out- it can't hurt.
More than anything, however, we need to start realizing that whether Down Syndrome is a "big deal" or not, we need to be more accepting of differences in our children. Statistically, what is occurring with the rate of abortions of babies diagonosed with Down Syndrome has become, no doubt, a form of genocide. There are, as we know, horrific consequences to turning a blind eye to such inhumanity.

Barbara | Jul 10, 2007

I think prenatal testing is a very personal choice. A person who does not object to abortion will do what is in their best interest. A person who believes that every human being's life is sacred will not abort under any circumstances.

I have a child (26 years old) with DS and other "normal" children. He is very much like them. He graduated from the same schools that they did, works, takes care of himself, uses all the modern technology (such as the internet, cell phones, etc.) that they do. He has a girlfriend and a large group of friends. He doesn't drive a car and hasn't graduated from college and I dont think these differences are sufficient to deny him life. Also I happen to think he is a good companion and fun to be with. - A prejudiced mom.

Anonymous | Jul 10, 2007

I have been in public with my DS child and perfect strangers have asked me if I had prenatal testing, implying "How could I let this happen". Other strangers have commented that their tax dollars are going towards taking lifelong care of my child. This was back when amnio was the only test. How is wider testing going to influence familes? Families, and especially mothers, are going to face more comments like this and will have to be prepared for it.

L..R. Green | Jul 10, 2007

In September of 2005 I purchased a report from the American Board of Obstetrics & Gynocology. In this report they stated that 70% of all babies diagnosis in utero with Down syndrome were assumed to be aborted. There reason for this was that they offered there patients two options nothing or abort.

They also stated in this report what the cost affect on society to raise a child with Down syndrome would be. I definetly feel that these so called physicians need to be educated on Down syndrome and that are children are a blessing. They make the parents to be, afraid to have a child with Down syndrome. Like they are having a frankenstein!!!!! The way it is going these physicians are no different than Hitler! I would not change my child for the world.

Sarah Phelan | Jul 11, 2007

My brother who has DS is 53 and it is appalling to see that doctors generally are as ignorant yet quick to advise as they have been for years. (Yes, I would not trade my brother for anything.) It is a shame that parents' initial advice comes from people who value quick brains and dexterity above so many other human traits (empathy, humor, humility, honesty come to mind). We must work harder to educate doctors -- suggestion for having "your DS person" accompany you to med appointments is excellent.

Anne Minihan | Jul 26, 2007

My son has the sort of disability for which there is no prenatal test -- yet. Once he was diagnosed, I went through a period of time where I was mostly worried, sad and fearful. I would hate to think that the time immediately following my son's birth would have been spent getting used to a diagnosis that I could have had months before. That was such a special time and, since abortion has never been an option in my own way of thinking, I believe that wider prenatal testing for DS would allow more parents to take a little time to get used to the idea of having a baby with DS, to learn about it and to find like souls to help them sort through their feelings so that when the time came, they could spend the first period of time with their baby in a joyful way.

I don't think, generally, that the solution to problems lies in having less knowledge. I think that there is no earthly reason why doctors cannot learn to deliver all kinds of news in a more appropriate way.