Here’s the second crop of emails I received in response to my November 16 op-ed. As noted previously: In response to reader requests, I’m posting as many as I can. 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 still more emails to come — I’ll try to post them soon. Many, many thanks to all who wrote.

View the earlier letters, and the comments from the Washington Post website.

________

I am the mother of a 14-year-old son with Down syndrome.

I feel compelled to respond to several things you said. First, when I learned I was pregnant with my third child (at age 41, due to one careless night of no diaphragm because we’d worked so hard to have our second child seven years after our first born I didn’t think it important) I actually thought about abortion. Our daughter was only 9 months old, I was 41, and I didn’t believe I had the energy to raise another child.

My husband convinced me, “we can handle this,” so once I’d made the commitment to have our child, I opted out of amniocentesis, what they were offering at the time. I knew that if the results came back “positive,” the natural
assumption/conclusion would be an abortion, which, oddly enough, I would never do, i.e., abort based on “less than perfect.” And so, fourteen years later, we are blessed with a son who has affected our family in many ways, not always positive, but no more so than the other two children.

Yesterday we had conferences at his school and we learned about all the things he’s doing in his freshman year (which, like most teens, he doesn’t share!). Yes, have the parents speak to the experts, other parents. This is our flesh and blood, our son who is proud of his family and an integral member of it. We can’t imagine life without him.

That is not to say there are difficult days. I talk frequently with a niece who is the mother of a 2 year-old son with Mosaicism DS. We frequently compare notes and I find I am careful not to burden her too much with the negative aspects of my son’s behavior since her son is yet so young. Yet she fully understands the so I needn’t worry! We do talk about the tendency of folks (e.g., our Down Syndrome Assn) to make EVERYTHING about DS rosy, which of course is not the case, anymore than it is with any child, especially in their teen years. The converse of this is presenting everything about having a child with DS as negative, undesirable, something, or better yet, someone to be eliminated, as you point out in your article.

There needs to be some place in between where parents are allowed to acknowledge the difficult aspects of raising a child with a disability, without being pitied by the general public or shunned by the Down syndrome community. While families (siblings) face difficulties and certainly life is different when you have a child with a disability, there are many redeeming factors that few people can imagine if they don’t have a child with a disability. Again–after all–that is your CHILD, your BROTHER or SISTER, for better or worse, and you will provide for them, defend them, to the teeth!

Finally (if you’re still with me) I REALLY agree with the person-first language.
In Minneapolis there is a wonderful organization, PACER (pacer.org) you may
be familiar with, that for years has included an occasional pull-out in their newsletter a “crib” sheet of sorts that presents “person first” language for many disabilities. Unfortunately, to this day, I hear medical professionals and teachers–even parents– referring to children with Down syndrome as “Down’s kids.” I used to be more active in re-phrasing their conversation, “kids with Down syndrome,” etc. but sometimes anymore I find myself weary. That in itself has been a fourteen year battle, after all. Thanks for bringing it to light again. I feel reinvigorated to promote “person first” language again!

I so appreciate everything you do. Now that I’ve learned you have a daughter with Down syndrome, it gives your purpose even more meaning.

Thank you.

Warm regards,
Adele

____________

Hi, Patricia,

A friend of mine referred me to your article today, which I read with great satisfaction. I have a 14-yr-old daughter with Down syndrome, who is an absolute joy — not just in my eyes, but in most everyone that gets to know her, and I was saddened by the stats in your article about the predicted number of women who will choose to abort should they find out their unborn baby has Down syndome.

I am grateful for people like you who have an opportunity to have a voice and spread the “truth” about people with Down syndrome — it is my mission to educate people about Down syndome whenever the opportunity presents itself – -my 16-yr-old daughter feels the same and is always educating her peers when they ask about he sister. But we can only do it one person at a time. Someone like you has a much greater opportunity to have an effect. Please keep up the good work.

Best regards,
Sheila

______________

I so appreciated your column this morning. I was just horrified during my 1990 and 1993 pregnancies — my doctor nearly begged me to have amniocentesis tests, tests which he admitted had a 1% chance of terminating the pregnancy. Who would take a test that would have a chance of destroying their baby? And who would make that decision as a result of a Down’s diagnosis?

Cathy

_________

Thanks for your editorial in the Post about abortion rates and Down syndrome. When I was pregnant in 1989 my ob/gyn repeatedly urged me to have prenatal tests for Down’s because I was “old” (35.) During his repeated pleas, he noted that each amniocentesis test itself carried a 1% chance of terminating the pregnancy. I explained that I would keep the baby regardless of its genetic condition, or the number of heads it had, and I would never consider taking a test that had a 1 in 100 chance of destroying the baby. Three years later, he shook his head when I reappeared at his office, pregnant, again denying tests.

I’m very happy that I didn’t listen to him. And I’m happy that my 17-year-old, and 14-year-old, are here.

Our society can just be shocking. Many thanks for providing some needed perspective

___________

I want to thank you for the excellent analysis of prenatal genetic testing, and its inherent bias against very special people. I happen to be a mother, a physician, and pregnant. I practice Family Medicine and therefore do not deliver babies currently, but I am trained to do so. You are correct that testing is falsely offered for “reassurance.”

During my first pregnancy, I opted against the triple screen blood test during the first trimester. However, even as a trained physician, I was naive concerning the Level 2 ultrasound. When it came back suspicious for Down syndrome, we chose not to have an amniocentesis.

Our child does not have Down syndrome, but the experience opened my eyes to some of the pitfalls of prenatal care in the US. Patients are often compelled to undergo blood tests and ultrasounds despite their lack of accuracy or medical necessity.

While my obstetrician colleagues comprehend the statistics and the ethics, they are understandably reticent about walking into a delivery room feeling uninformed. Their experiences have taught them to avoid surprises at all costs. I sympathize with them, and I agree with you that Americans have an unhealthy and misguided expectation for “perfect children.”

During my subsequent pregnancies, as well as the current one, I have chosen against all testing that is not medically necessary. Reading your column, I feel both relieved and encouraged that I’ve made the correct decision. You have a lot of credibility, and I want you to know that your writing makes a difference in people’s lives.

Sincerely,

Jennifer

_______________

Subject: A geneticist responds

Dear Patricia,

I think you add an important voice to the discussion about genetic
testing, but some points in your article seem a bit misleading.

While my perspective from working in a major medical center will tend
to be biased, certainly all discussions about genetic testing seem to
take place against the absolute requirement that people understand the
potential repercussions of the tests which they are signing up for.
Perhaps we make it a bit too easy to check yes for this test, but
perhaps people should also read and carefully consider what they are
signing. The ethical issues related to genetic testing are fairly
obvious. It can be simplified by saying “In light of an atypical
finding, would you want to terminate?” If the answer is “no,” then
people should think carefully about the tests they order.

Frankly, I find it a relief that more detailed diagnostics are gaining
traction. A new generation of tools for serious genetics is being
developed by giants in the field like Baylor and Emory. As array CGH
becomes widely available and the copy number variations (far beyond
trisomy 21) become available and correlated with birth outcomes or
other phenotypes, patients will be able to know whether the genomic
variation they are observing falls in the spectrum of typical or not.
The more times a deletion or duplication can be observed and
correlated with some outcome, the tighter the diagnostic precision we
have in diagnosing based on such variant.

About a year and a half ago, some colleagues found an inversion that
exists in 20% of Caucasians. It was noticed that occasionally this
could result in a deletion and that this deletion accounts for fully
1% of mental retardation in Caucasians. It’s the little victories like
that which will give people who don’t view a blastocyst as an
soul-bearing entity a choice. In in the view of this subset of
society, it is a choice that can be the difference between creating a
life that may alleviate a great deal of physical and emotional
suffering for many involved.

At this year’s American Society for Human Genetics meeting in San
Diego, I trolled the clinical genetics posters as I do each year.
There are trisomies and deletions and genetic conditions, I assure
you, that make Trisomy 21 seem like a highly desirable alternative.
Organs outside the body, anencephaly, trisomy 18, and other obscure
findings that could have been prevented with with the new generation
of technology. My heart goes out to the families that find their lives
turned upside down by the avoidable–for those individuals who might
have liked but were never given a choice. My admiration goes out to
those who have the resources and the bravery to choose to have
children with these syndromes.

– Rx

_____________

Dear Patricia,

Thanks for the informative article. My first grandson was born with Down syndrome and is now 19 months. There are 2 older sisters (7 & 4).

I am learning a lot about my grandson and can’t imagine anyone seeing him and thinking that he should have never been born.

Keep up the good work wih your news articles.

Pat

_________

I read with interest you article. I have a nine-year-old son who happens to have DS. I remember when I was 38 years old and pregnant with him, and the nurse practitioner wanted me to have an amnio. Having a sister born with oxygen deprivation at birth my parents were told to put her away, that she would amount to nothing, I knew the only outcome of an amnio was abortion.

I refused the nurse practitioner, only she refused to honor my decision. She would not let me out of the examining room she continued to try to intimidate me into the amnio. The high pressure and medical fears she put on me were terrrible. After about 30 minutes of arguing I finnally had to scream and cry to get out fo the examining room.

I went immeditely to my OB and told him she should be fired. Part of me does not blame her — I am married to a physician, and pressure to try to make ends meet each year are outrageous. Malpractice increases and medicare fees decrease every year. There is no capitalism in medicine. I am sure it was the nurse practitioner’s job to up sell those procedures when possible.

My husband cares about his patients, not the pocketbook. Many doctors do not have clue about the fees; they are all about the care, yet they are put down constantly for this trait. Lawyers get their fees upfront without any assurance of a victory in court.

Good doctors do their best and can’t get the government controlled pricing fees that do not even pay the bills anyomore.

Anyway thanks for your insight.

Beth

___________

Dear Ms. Bauer,

As I read your editorial, memories of my pregnancy with my fifth child surfaced. At 42, genetic testing for Down Syndrome was recommended. My response to the nurse was that results of testing would not change my pregnancy and that I could accept having a child with Down Syndrome.

The nurse’s response startled me. She proceeded not only to inform me that these children were extremely difficult to discipline and care for but also to relate some instances which she herself had witnessed. I truly felt that she was attempting to convince me that I would regret such a decision and that individuals with Down Syndrome were worthless and troublesome. Initially stunned by such a response from a professional,

The thought that there was no guarantee that I would receive support from the medical community saddened me. My sadness eventually developed into a quiet anger that developed into a determination to prove her wrong if I gave birth to a Down Syndrome child.

My daughter B was born twenty years ago and is a blessing to our family. She is loved by those who know her and those who have the privilege to interact with her. This includes teachers, neighbors, friends and people in the community.

B danced in the Nutcracker production for several years, swam for the swim team, and was an active member of the high school chorus. I believe that B and all of the adults like her are proof that individuals with Down Syndrome can and do experience a good quality of life.

Parents who face the decision to bring a Down syndrome child into the world fear the unknown and struggle to resolve their own bias regarding individuals with disabilities. There is much that depends on physicians and you have described so well what needs to be done. When B was born, I was fortunate enough to receive expert professional support and my determination to prove that nurse wrong intensified.

My hope is that our daughters will in some way help dispel negative thinking and decrease the lack of knowledge about Down Syndrome. I believe that this can happen by the simple fact that they live and breathe and are loved. It is disheartening to think that our society places such value on having the “perfect” child.

Together you and I will continue to hope for “acceptance of genetic diversity” and love our daughters for who they are and not dwell on who they could have been. I feel we have been blessed.

Sincerely,

Maryanne

_____________

Hello Patricia,

I totally agree with this article — this so parallels our group’s issues as to when we are diagnosed as having a child with congenital diaphragmatic hernia (CDH). Some of these children also have other syndromes or issues too. We have supported members who chose Compassionate Births because their child had little chance of life after birth and we do support those that after hearing all the information and knowing their child’s case terminate. That is such an ugly word for these women though — because they truly wanted this child but do not want the pain and suffering that some have before they do die. And in many cases it isn’t the typical “abortion” but an induction and saying hello and goodbye.

We have so many members – with both surviving children and non-surviving children of CDH – that were pressured by health professionals to terminate. One recently told me that her hospital asked her EACH and EVERY time she had contact. Respect our decisions period.

No — we don’t know how we are really going to do with these special children in our lives but we are willing to give it a try. That should be commended.

Thank you for speaking out on this issue. I believe in testing — no doubt but I also believe that there is a reason we were chosen to be parents to these children. My OB/Peri — Dr. Siva Thiagarajah – Martha Jefferson Hospital – Charlottesville, Virginia — was respectful of my choices as were his staff. He allowed me to attempt a regular delivery after my CDH child was a c-section. I had the Nuchal Scan with my last child and three ultrasounds. That was all the testing period. If we had found that my son had a chance of Downs — I don’t think we would have opted for further testing — except to be sure if he had a heart issue to have him at a medical Center where they could care for him. We were blessed — he is VERY healthy — I treasure that. His sister was the sickest baby in the NICU. We know the difference but we are parents to both children.

With warm regards,

Elizabeth Doyle-Propst

www.breathofhopeinc.com

_______________

Dear Ms. Bauer:

While I respect your opinion and experience as a parent of a person with
Down syndrome, your article is silent regarding the siblings’ experience of
growing up with a special needs sibling or managing care of the sibling once
an adult.

To me, this potential burden to other members of a family is an
essential consideration no matter how potentially productive and happy the
Downs Syndrome child could be or become. Siblings do not have any say in
the parents’ initial decision to carry a baby with a known abnormality to
term, yet often spend a bulk of their lives directly impacted by the
parents’ decision.

Doctors delivering an unexpected diagnosis should refer
parents to the real experts — other parents AND adult siblings living with
the parents’ decision. Your article, albeit limited by space concerns,
cannot be persuasive unless this facet of this controversial issue is
addressed.

Sincerely,

Rachel
(Sibling of an amazing, loving brother who is developmentally delayed and
who still wouldn’t wish this experience on anyone if preventable and
daughter of a physician who wish she could have known the implications of
having a child with developmental delays)

_____________

Re your Nov 16 column about Down syndrome in the Washington Post:

You may be happy with your situation, many would not. It is their
prerogative to decide whether they are willing and able to deal with
Down syndrome or any major handicap. It is also unfair to paint an
overly rosy picture of “acheiving and thriving” Down syndrome people,
most need help in order to be functional. And no society, even one as
rich as this one, can afford vast numbers of citizens with special
needs.

I myself have a handicapped adult child who lives with us, and
I stay home and take care of him since I have that luxury. But I
wouldn’t for one second judge any parent who felt unable to muster the
financial, mental, and emotional resources to do so.

Would you just stop moralizing and lay off the guilt trip, please.

Vijaya

_________________

Hi Patricia,

Thanks for writing this article! My frustration with the medical community
is that there is this huge push to test with the assumption that the worst
thing that could happen to you would be to have a child with Down syndrome.
My son is the best thing that has happened to me and yes, he has Down
syndrome.

I really liked the verbiage you used in your article. The term “condition”
is much more accurate than the usual “stricken with” or “suffers from” Down
syndrome.

Thanks again for writing this article!

Regards,

Marti

____________

Hello

I read your article about Downs Syndrome and the
testing that is done.

I have a child with CP. When I was pregnant with my 3rd child, my AFP came back positive. My husband and I elected to have an amnio done. We did NOT do this to change our minds or do anything different, except to have the right doctors lined up and to have help with our other 2 children. Why should the tests go away? They are there to help us and to prepare us for what lies ahead and how to handle it. Having one child with a disability was a lot to handle. Then to find out I may have another with a different disability, ooooooo.

I think that information and preparation is the reason to have these tests done. And i would hope that the tests don’t go away.

Also, I find it hard to believe that 90% of confirmed Downs pregnancies end in abortion.

Monica

PS oh and my 3rd child was not born with Downs, but
when doing the ultra sound with the amnio, found
another condition that would of been missed! Thank
God for the tests! Having the right doctors when your
child is born is so important!

_______________

Patricia,

Thank you for a great column, and for being willing to put such truths out there.

I have joined the board of our local Down syndrome advocacy group, and it is only just beginning to dawn on me what we are up against if we really want to get people on board with the idea that people with Down syndrome are valuable, interesting, valid people. There is much work to be done, but there are so many of us out here. We just have to keep being loud, and doing the research, getting people the hard data to back up our anecdotes.

Thank you for being a loud voice with a vast audience. I am sure you made some people think this week.

Abby

This entry was posted on Wednesday, November 28th, 2007 at 5:26 pm and is filed under Down syndrome, NOT2BEMISSED, PB Articles & Essays, prenatal diagnosis. 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.