Here’s the first crop of emails received in response to my November 16 op-ed. My goal is to post them all in the order received. Because the people who wrote did not expressly grant their permission to have their work published, I have stripped the emails of identifiers. (If you’re one of the writers and you’d like to include your identifying information, please let me know and I’ll put it back on!) There are lots more emails, which I’ll post as time allows. Many, many thanks to all who wrote in to share their views and experiences!

____________

Patricia,

Thanks for the article in the Post. It was an eye-opener. Doctors prior to 1970 who were unfamiliar with Down syndrome use to counsel families to institutionalize their special children or hide them out in their homes. Now it seems that the use of prenatal screening process and their advice is equally misguided. These prospective parents and evidently many in the medical profession do not know the joy, love and productivity that those with Down syndrome bring to those around them. Your article helped to remind us all.

Bob
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Good morning, Patricia,

We recently stopped our subscription to the Post, as we are in the process of moving. A copy landed in our driveway this morning as a sign that we were to read your article.

Our journey with prenatal testing began 3 1/2 years ago with my first pregnancy at the age of 40 (fossil in OBG terms.) We consented to nuchal translucency testing only because it was not invasive. We were very happy to see our daughter on ultrasound, as she looked perfect to us. The testing revealed an abnormal result, predicting Trisomy 18. Both my OB and the ultrasound tech kept reminding us that this is a fatal condition. The ultrasound tech was so very cruel in her comments, even though our level II ultrasound results were normal.

Today we are celebrating our daughter’s 3rd birthday. She is a beautiful, healthy, happy child. Clearly the healthcare professionals on whom I was supposed to
rely on gave me some very bad advice when they suggested termination.

Our second daughter N was born on 4/20/07. With this pregnancy, we refused the nuchal translucency testing based on our experience. At the level II
ultrasound, we were informed that the nuchal translucency was abnormal, the fingers were floppy, that everything pointed to Down Syndrome. The
ultrasound also showed that her heart was perfectly formed and her brain was developing normally. As the tech expressed frustration because N was moving so much, I told her that N would kick ass in Special Olympics someday.

Our beautiful little N is a perfectly healthy baby who happens to have an extra set of chromosomes. On the advice of her geneticist, we don’t even tell
anyone that she has Down syndrome. We want people to know and accept her as our daughter, not a diagnosis.

I am very thankful for my two beautiful daughters. I do worry about the cruelty of others that N will inevitably encounter in her lifetime. It is unfortunate that our population is intolerant of differences, whether they be genetic, racial, ethnic, or religious.

Thank you for your article bringing attention to this form of discrimination.

____________

Thanks for your piece in the Washington Post.

I am the mom of a teenage boy with autism.

In a liberal, rich state like Maryland, you’d think that the services and supports for children and adults with disabilities would be among the best in the land, right? Instead, Maryland has years-long waiting lists for supportive services and hostile school systems.

You wouldn’t believe (or, then again, maybe you would) how many people ask me how much longer my son will live at home with us, or whether I have considered “putting him somewhere”, or even worse, “putting him in a home” (to which I reply: He has a home right now, with us).

I think society has bought into the idea that, as you say, a child with a disability is a “bad outcome” that can be prevented and therefore should have been prevented. And that attitude translates, in Maryland, into a waiting list for residential services for adults whereby the parents of the adult child may be in their EIGHTIES before their adult child is able to live apart from them.

Lyda

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Ms. Bauer, you have done a wonderful thing by writing that op-ed piece in the Post. It was smart, smartly written and hit every possible point.

I also appreciate your description of the “right to choose” not to be screened. As one who was hounded, when I’d just hoped to have a relaxing, stress-free pregnancy, I thank you for raising this issue.

I thank you, and my little girl thanks you!

Kate

___________

Your point is well taken.

I find it difficult to be a harsh critic of abortion since I am a man and do not have the burden that a woman has with respect to pregnancy and child rearing.

Having said that, I do believe that in order for abortion to proceed it is necessary to depersonalize/dehumanize the embryo by the use of terms such as fetus, and embryo, and engaging in arguments as to when life does and does not begin. I note that I have never ever heard of a wanted pregnancy where the parents referred to the life in the womb as an embryo or fetus – always “my/our baby.”

The only significant discontinuities in the evolution of a single human being are conception and death. Birth is an interruption of process of survival and not remotely as dramatic as conception and death.

This is an issue that will only grow more disputative as years pass and parental preferences drive abortion decisions. The “fetus/embryo” mind set facilitates the decision to abort and with the dehumanization there is little moral consequence to aborting whatever the parent(s) may not like about the projected nature of the child.

Harold

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Dear Patricia:

I cannot tell you how much I appreciate your editorial that was published in today’s issue of the Washington Post. I am the mother of a six-month-old son with Down syndrome who is the joy of my life. His diagnosis was not picked up on any of my prenatal screening tests, and I declined an amniocentesis, even though I was 37 years old, because I was concerned regarding the risk of miscarriage.

Within hours of my son’s birth and subsequent diagnosis of Down syndrome, my husband I were pressured to watch a tape detailing all of the health and developmental issues that can occur with a child with Down syndrome. While bombarding us with all of this negative information, they failed to perform and echocardiogram to pick up a heart defect that my son was born with (complete atrioventricular canal). Luckily, our pediatrician was smart enough to order one a few days following his birth and he had successful heart surgery at two months of age.

My son is currently receiving early intervention services and doing amazingly well. He is loving, kind, and extremely aware of his environment. He is also a very persistent and bright child. From the day he was born, he has been a joy and unlike “normal” children (I hate that word!), he only cries when he actually needs something.

A friend of mine had a son with Down syndrome around the time that my son was born, and she found out about the diagnosis prior to his birth. She and her husband never considered terminating the pregnancy, even though her pediatrician tried to push her to abort.

I find it so interesting that the people who feel that terminating a pregnancy when a Down syndrome diagnosis have usually not even had the benefit of knowing somebody with Down syndrome. Every mother I have ever spoken to who has a child with Down syndrome tells me the exact same thing - “This child is a gift.”

Your article was such a pleasure to read and echoes my sentiments exactly. Like you, I know the joy that a child with Down syndrome can bring into a mother’s life.

Very sincerely,

C.

_________

Hello Ms. Bauer,

I wanted to thank you for your thoughtful column in today’s Post. I still remember when I was pregnant with my daughter (now 9) how my doctor practically insisted that I have prenatal testing. I asked my doctor if anything could be done to fix/cure any situation found, and she said no. So I declined, knowing I would never abort, regardless of what was found.

If environmental issues are called “Inconvenient Truth,” then this issue could be called “Inconvenient Life.” Not until we as a country value everyone equally, regardless of ability or stage of development, will this go away.

Good luck to you and your family, and keep writing!

Peace,
Karen

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It’s more realistic to think of Down syndrome as a “bad” outcome rather than a “good” one, no matter how you parse it. And can you realloy reproach the 90 percent who choose abortion on finding out that a fetus is afflicted with the condition? What cosmic purpose is really served by choosing to raise a handicapped child rather than a normal one? Once burdened with a Down syndrome child, the only option is to make the best of it and I applaud you for doing so, but it is hardly a reason to urge others to willingly assume such a burden when there is no need to and no purpose served by doing so.

Sincerely,

Max
__________

Thanks for your wonderful essay on Down syndrome and prenatal testing. I’m going to share it with students in my anthropology classes at the University of _________ (this week, and in future semesters).

Kathy

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Ms. Bauer,
I applaud your column in today’s Washington Post. As a mother and citizen of the world, you touched my heart and made a rational, balanced presentation of the problems of modern obstetrics and ethics. Now days, we hear so much about diversity, yet very few writers address the ultimate result of the slippery slope that is prenatal testing. As a teenager, I babysat for a wonderful young man who had Down syndrome. Of all the children for whom I cared, he was the most charming, loving and wise. Every person I meet brings the promise of a richer life. What a wonderful column to run a week before Thanksgiving. I appreciate your sentiment and your sensible suggestions to improve the discourse parents share with their doctors.

Julie

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Ms. Bauer -

I read your column in today’s Washington Post titled “If the Test Says Down Syndrome”. I think you are addressing one of the most troubling aspects of recent technological advancements in prenatal health care. Professional societies like the American College of Obstetricians and Gynecologists have established practice standards that clearly will encourage some parents to accept only the “perfect child”. Even worse, some individual physicians are taking a far more aggressive role to orchestrate and promote this type of behavior. As an example, I want to relate to you a personal experience.

Almost twelve years ago, when my wife was about three months pregnant with our second child, we received a phone call from her doctor, a highly regarded perinatalogist in the North Dallas area. He told us that he had some unfortunate news - my wife’s amniocentesis results indicated the baby (a little girl) in her womb had mosaic Down syndrome. He asked us to come in to see him within the next few days so we could talk about how to proceed.

We were, of course, stunned by this news. When we went to meet with the doctor, his discussion focussed solely on the logistics of scheduling the procedure to terminate the pregnancy. From his perspective, there was no decision to make as far as whether an abortion was appropriate - it was merely a question of how to carry it out. As we left his office, both of us (and my wife in particular) had the impression there was no other choice to consider.

Over the next few days, I began to question the inevitability of this course of action, and at our next meeting with the doctor I expressed my reservations. His response to my uncertainty was unequivocal - we would be foolish to consider proceeding with the pregnancy. He told us that having such a child would be terribly unfair to our other daughter, and that there was a very high likelihood it could destroy our marriage. He said, and I quote, “your world will crumble as you know it”, and that we probably would never again be able to do common things like go out to a nice restaurant. His words still ring in my ears.

Needless to say, my wife was terrified by this “counsel”. However, I am somewhat stubborn by nature and continued to question whether this was the right thing to do. I sought other sources of information to learn more about Down syndrome and especially the mosaic variety, which is a relatively unusual form of the genetic condition in which only some fraction of the cells contain the extra 21st chromosome. I found, among other things, that mosaic individuals span a wide range of developmental characteristics, including some with very limited cognitive abilities and many physical problems, and others who are largely indistinguishable from people with just two copies of chromosome 21 (including at least one high school principal and at least one nurse). But the most important thing I learned was something our doctor never even mentioned — the existence of hundreds of families who are ready and willing to adopt children with Down Syndrome.

This information eventually led my wife and I to proceed with her pregnancy, providing us with additional time to consider whether we were up to the challenge of raising such a child. The “adoption option” gave us the strength to get through those first few weeks following the initial diagnosis. We had the comfort of knowing that we weren’t trapped, and that if we eventually decided we were incapable of being this baby’s parents, someone else was happy to do it.

By the time my wife gave birth to my daughter, it was clear to both of us that this child would stay with our family. Time has a way of allowing us to settle into new roles, and by May 21, 1996, we were ready to take this little girl home and get on with our lives.

I hope this story helps to illustrate how the behavior of some (many?) individual physicians goes far beyond the purportedly objective guidelines disseminated by the professional medical societies. Our doctor clearly tried to drive us towards what he believed was the only rational outcome. When we informed him of our decision to proceed with the pregnancy, he told us we were the only individuals in his practice history who had made such a choice. So either he was still trying to manipulate us through psychological isolation, or he was very effective in getting other prospective parents to do what he wanted.

By the way, my daughter is now 11 1/2 years old, over five feet tall (two inches greater than her older sister, which constantly irritates the elder child) and in a regular fifth grade class. She has received special education resources since she was about two years old, provided within the standard classroom environment. Thanks to this assistance and the tireless efforts of her mother at home, she has exceeded everyone’s expectations - she is taught a non-modified curriculum, takes the same tests as all the other kids, and succeeded in making her school’s Honor Roll three out of four grading periods last year. Outside of school, after five years of work, she attained the rank of advanced brown belt in Tae Kwon Doe. And closest to my heart, she loves playing fastpitch softball and has developed a wicked windmill pitching delivery.

But most of all, I can’t imagine our family without her. She is her sister’s best friend, giggling and bickering with her every day. She is, pure and simple, a blessing. I just wish more of our learned medical experts had a clue.

Bob

___________

Dear Patricia,
Thank you for a terrific article on Down Syndrome and genetic testing. As the parent of a 10-year-old daughter with DS I appreciate your positive viewpoint in a national forum.

It seems to me, many who proclaim they want diversity only want diversity within the confines of their comfort zone. Yes, acceptance of genetic diversity would indeed be a good thing.

Yours truly,

Paulette

__________

Thank you Ms. Bauer for your thoughtful column. Parents need to know prenatal tests aren’t always needed nor accurate. Most importantly, we all need to remember a disability doesn’t necessitate abortion. I fear a world where children with Down Syndrome or other differences are not welcome. Coming through the birth process “perfect” doesn’t guarantee an adult we would all choose to include in our neighborhood. I hope your column is widely read, especially by doctors. You performed a great public service today.

Celeste

_________

Dear Patricia,

I appreciate your article in today’s Washington Post.

I had a daughter who was born with multiple birth defects. She was profoundly retarded, had Cerebral Palsy, microcephali and never physically developed past 3 months old. She needed full time care and then some. As a 25 year old single mother, and certainly the last to believe that my child wasn’t going to get better, I placed her, at age two, into a wonderful, loving, clean, beautiful place.

I am citing all this because despite the fact that we don’t know if she even knew who we were, the world was a better place for her being here. I get so mad at people who consider aborting a “different” child. All my daughter’s family and caregivers loved her and did everything they could to make her comfortable. She was never hungry or in pain and always clean. In her world, she was happy and content. If we don’t place our values on others, then who are we to say that their lives aren’t worth it?

Sincerely,

Diane

____________

Dear Ms. Bauer: Thank you for your informative article about folks with Down Syndrome. I have a 46-year-old son who lives in a L’Arche community. He has worked for over 11 years washing and cleaning police cars, he plays soccer with Special Olympics, helps cook meals, cleans his own room, does his laundry and is a talented and enthusiastic dancer. He is a confirmed member in his church and is one happy, well-loved special fella. And he is healthy.

I am saddened, as you are, that couples, when faced with the possibility of having a baby with Down’s, choose to abort, not having been informed about what full lives people with Down’s can live and what a gift they can be not only to their families but to their communities. Granted there is a different way of helping a person with Down’s to develop to his or her capabilities, but the joy of discovery and the loving response of him or her is immeasurable. I have received unconditional love from my son — and that is priceless.

I hope couples take heed of your article and seek to learn about what a special gift a child with Down syndrome can be and how much help there is out there from other parents.

Thank you again.

Emmy Lu

_____________

Ms. Bauer, thanks for your article on the 16th in the Washington Post. My wife and I have a 22-year-old son with, what we call, a chromosomal bonus. He is joy to us and is a valued member of our family.

I share your concerns about prenatal testing and predictable outcomes to the information gleaned. I think it is unfair to pregnant women to be put in a position of making life and death decisions, when I believe many go into the tests with good intentions.

I also believe that while testing is often defended as a way of helping prospective parents make an “informed” decision, that there is no test, no books, no testimonials from parents (although I support this) that can replace what we learn from our loved ones as we live our lives with them. If someone wants to be fully informed, then they need to live with the child and see for themselves.

Sorry to burden you with an email as I am sure that you will get many from many parents like me (us). Just know that I, for one, share your beliefs and concerns.

Thanks.

Steven

____________
Dear Ms. Bauer,

Thank you for your letter about Down Syndrome testing. I personally experienced a lot of infertility trouble and ended up having my last two children at 37 and 43 years of age.

Boy, did I hear about the need for testing. I was even reminded during a sad miscarriage. Like once I finally managed to get pregnant I was going to mess with it! The Lord had told me not to be afraid regardless of who was born to me. My sister and I agreed that it would be easier to deal with a born baby — regardless of problems — than spend 9 months imagining.

If I could share one event from the pregnancy of the baby I had at age 43, the nurse midwife had just gotten a heart beat. I was so happy and relieved. I had a live baby. Then she left the room for a moment. When she came back, she said, “now for the bad news.” My first thought was that somehow the baby’s heart had stopped beating while she was gone. Then she went off on a discussion of genetic testing. I felt like throwing her out of the room. If God was blessing me with a live baby, I was going to love it with all I have.

For the baby I had at 37 years old, I had to sign a waiver saying I had refused genetic counselling.

I have had many women tell me that because of age their doctors required them to have amniocentesis. I can’t explain to them that a doctor can’t require that testing. Personally, because of my own infertility background (and I know I’m not alone) I have trouble understanding this business of picking and choosing children. I mean, you can have a 100% healthy, normal child and have it receive a permanent brain injury in an automobile accident. Then what do you do?

As it turned out, neither of my sons has Down syndrome, or any other syndrome, but I continue to feel quite angry when I hear about testing for and eliminating Down syndrome babies. Incidentally, I have met many mothers of children with Down syndrome who are very happy. I remember one woman in particular telling me, with tears in her eyes, about how her daughter started learning to read with sight words like “water” and “sand” while they were on a family vacation.

The only thing I can add is that perhaps more accessible, affordable healthcare would help the situation.

Thanks for letting me ramble. I just want ot say that I agree with you and the opposing trend is scarey.

Elizabeth

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I read your column with interest and I can understand your enthusiasm for advocating for informed consent by those families who wish not to have a Down syndrome child. I’m not sure it’s because parents (mothers) aren’t informed by physicians, advocacy groups etc. Of course, there are false positives and negatives in testing procedures — the point is, statistically, how often these occur?

I can think of a number of reasons why parents would not want to have a handicapped child — more burden on them and perhaps other family members (perhaps there are studies indicating the effects on “normal” siblings and on divorce or separation rates of parents which would influence a parent’s choice). There may be societal considerations in the event the parents are concerned about the lives of others — is it more costly for the state to assist in the care and education of a Down syndrome child, is there more medical care involved, will the Down syndrome child become a productive member of society? In the long term I know of one elderly couple who are deeply concerned about who will take care of their child when they are no longer able to — will the institution be as nurturing as they have?

The reasons parents make decisions on why to abort a child are varied. I don’t think any woman gets pregnant wanting to have a Down syndrome baby in the cause of genetic diversity.

Sincerely

Barry

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Patricia,

About seven weeks ago my wife (now in her 6th month) and I were informed that our baby had Down’s. Within 30 seconds of being told, the doctor’s emphasis transitioned to our “alternative”, in a manner that sounded more like a foregone conclusion than an alternative.

In the weeks that followed, this theme was echoed often by others in the medical community. Had we not reached out to other sources for information, I wonder that our decision may have succumbed to the obvious convention.

After much research and personal visits with parents and children, however, we decided to have our daughter and are looking forward to her arrival with confidence and comfort in our choice. But we were both dumbfounded by the not-so-subtle, strong prejudice toward the “alternative”.

We are fairly strong-minded professionals whose decision was based on what we feel are logical empirical facts, and we feel more blessed than frightened (though there is a fair mix of both). But throughout our decision-making process, we felt a pretty strong push-back that made us wonder how other prospective parents’ “decisions” are pre-packaged for them. Your editorial today raises an important issue that needs a lot more visibility. Thank you.

Kevin

This entry was posted on Tuesday, November 27th, 2007 at 9:13 pm and is filed under Down syndrome, NOT2BEMISSED, PB Articles & Essays, abortion, prenatal diagnosis, public attitudes. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.  Email This Post