Monday, January 25, 2010

'All of life is fragile and uncertain'

I'm delighted to share a guest blog today from Amy Julia Becker, mom to Penny and William, above. Amy Julia is a writer and a student at Princeton Theological Seminary. At Thin Places she blogs about "theology, disability, children and parenting, education, and the intersection of grief and hope." I like the way she makes me think. Thanks Amy Julia! Louise

'All of life is fragile and uncertain'
by Amy Julia Becker

I remember how I felt two hours after my daughter Penny was born, when I first found out she had Down syndrome. I wracked my brain for information about this thing that had just happened to our family. All I could come up with was early death and mental retardation. The doctors didn't help much. In the hospital, we received a list of all the things that might go wrong: heart defects, leukemia, celiac disease, developmental delays.

Two years later, I'm pregnant again. Recently a colleague exclaimed, "I didn't know you were expecting!"

I grinned and patted my round belly: "Hard to miss."

"I assume you've done all the screening on this one to find out, if, you know . . . "

I tried to explain why I wasn't opting for amniocentesis, why I was uncomfortable with the prenatal testing industry in general, and why I wasn't particularly concerned about having another child with Down syndrome. She didn't seem to understand.

Penny is 27 months old. She says "no" with the gusto of any of her peers. She uses spoken and signed words to tell me what she did at school today, and the names of her friends, and what she would like for her afternoon snack. Penny loves music. She's learning her shapes and colours. She gives lots of hugs. She's also very small, and she wasn't able to walk steadily until a few months ago. She is my daughter. She is my daughter with Down syndrome.

Asking whether I am at risk for having another child with Down syndrome (statistically speaking, yes, my "risk" at age 31 being 1 in 100), is akin to asking whether I am at risk for having another child with brown hair, gorgeous green eyes, her father's hand-eye coordination, or her mother's love for books. It implies that Down syndrome is something separate from Penny, something that could be extracted if only we had the proper tools and procedures. But that extra chromosome is intrinsic to Penny's being. To take away Down syndrome is to take away Penny.

Later, I heard a report on NPR about a new ethics recommendation from the American College of Obstetricians and Gynecologists (ACOG), stating that doctors unwilling to provide abortions have an obligation to refer their patients to another physician who will provide them. The spokesperson said: "If a physician has a personal belief that deviates from evidence-based standards of care . . . they have a duty to refer patients in a timely fashion if they do not feel comfortable providing a given service."

Studies show that women who receive a prenatal diagnosis of trisomy 21 (the technical term for Down syndrome) terminate the pregnancy 85 percent of the time. Since new medical guidelines - including "evidence-based standards of care" - suggest that all women, regardless of age, be screened for trisomy 21, it is most likely that the number of prenatal diagnoses, and the number of terminated pregnancies, will increase. Evidence-based standards of care result, more often than not, in the elimination of people like my daughter from our society.

As a result, I am somewhat skeptical about the standard of care offered to these mothers. I'm skeptical, too, when "personal beliefs" are pitted against evidence, implying that a physician unwilling to perform an abortion has defied ("deviated" from) the facts. I understand that many women face unbearably difficult choices about the health of their babies. Some choose to terminate their pregnancies because they have been given information about the near certainty of physical abnormalities and high possibility of early death. Yet many also choose to terminate based on probabilities, fear and misinformation. In the case of Down syndrome, many receive incomplete and outdated data.

The most recent ACOG parent education brochure entitled "Genetic Disorders," published in 2005, defines Down syndrome as "a genetic disorder resulting from an extra copy of the 21st chromosome in which mental retardation, abnormal features of the face, and medical problems such as heart defects occur." The brochure reads the same as the brochure published in 1995; by definition, it is not up-to-date.

One has to hope that in following "evidence-based standards of care," doctors and nurses will do better by their patients than 10-year-old boilerplate. I hope they include the fact that the life expectancy of people with Down syndrome has doubled in the past 25 years, or that the average IQ of a person with Down syndrome has doubled over the course of the 20th century, or that many physical "defects" can be corrected relatively easily because of advances in medical care. (Penny had a hole in her heart, for instance, that may well have killed her a few decades ago. Now, it didn't even warrant an overnight stay in the hospital.)

I will follow my doctor's orders and have a level 2 ultrasound. I will pray that this baby's heart, lungs, brain and limbs look healthy and whole. I will try to remember what I felt when the words Down syndrome first became a part of our reality. I will try to have compassion for every person who has trouble understanding the blessing Penny is to our family.

I will also hope and pray that physicians advising women who are frightened, confused and faced with life-changing decisions will offer those women a true choice, an informed choice, a choice based on the evidence that all of life is fragile and uncertain, with potential for heartbreak, and for great joy.

This article was originally published in the Philadelphia Inquirer on July 13, 2008, with the headline: Down syndrome is a part of who my daughter is.


Thank you for this post. I am in such strong agreement I dare not fully express myself here. I will add a pitch to promote the books Gifts and Gifts 2.

Beautifully written. The truth always is.

What a wonderful post! A couple years ago, back in Budapest at my doctor's office, I sat by a young man who had Down syndrome. We got into a conversation and he was absolutely delightful. He was very polite using formal Hungarian with me, he was well-spoken, sweet, funny and by far the funnest person to hang out with in the waiting room. Sure, he had "challenges" and he would have scored lower on a standardized IQ test than the other patients at the office, but he lit up the room and my day and made her mom, who was sitting a couple seat away from us, beam with pride.

So nicely said. My first child had a stroke at birth, and we found out afterward that both of us had blood-clotting mutations. I decided to have my second baby checked in utero for them. I just wanted to KNOW, though she was ours no matter what. She has them, and she was born OK.

Thanks everyone! I loved this story because it addressed many of the experiences I had, including a very biased view of Down syndrome as "burden" by an obstetrician who was supposed to counsel me when it was thought I had a higher than usual risk of having a child with Down syndrome. I love Amy Julia's final sentence, about how all life is full of the potential for heartbreak and great joy. I don't see those two as separate or opposites anymore. I used to think that happiness was the absence of pain and that if we could only avoid pain, that was happiness. But I now see how the two are intertwined and the essential "stuff" of life. Thanks AJ!

Thanks for the invitation to post! I want to echo Louise's point that joy and sorrow are intertwined in this world. We first learned that as my mother-in-law was diagnosed with liver cancer. It was tempting to stay neutral and avoid the grief that would come with her death. But in admitting and receiving that sadness, we also received a deepened relationship with her that was marked by love and joy. Thankfully, with Penny, although there has been some sadness along the way, that sadness has much more to do with the world around us than with anything she or we have experienced personally. It may well come, but opening ourselves up to the possibility of sadness has so far led mostly to great joy. Again, thanks for the chance to share the story here! --Amy Julia

Would it be wrong to say "hell yeah!" because that is exactly how I feel. My son had a stroke the second day of life and now has cerebral palsy. And he is such a blessing.

Hell yeah sounds great to me:). And I just saw from your profile that you're from Louisiana. Our daughter is named for her grandmother, who we call Grand Penny, from New Orleans, fyi. She also has a story that I thought was worth telling, so I wrote a book about her called Penelope Ayers. Anyway, thought the Louisiana part of you might be interested:). (Grand Penny would have said hell yeah too).

Katy -- I recognize you from To the Max and I'm so glad you're here! I encourage our readers to check out your blog. I just took a peek and saw some beautiful, thoughtful writing about parenting and pics of your adorable son. I noticed a post about a painting you are doing for a fellow-blogger whose son lives in a group home? I didn't see any follow-up post. Did you finish that piece? Will you be posting a photo? I would love to see it. Thanks for stopping by and hope to see you here again! And thanks for commenting on What makes us human, too!

We need to talk more about prenatal genetics and its effects. It is not a case of denying choice to terminate but rather ensuring respect for the choice not to terminate.

In my opinion, the system is agressively seeking to terminate all unborn who don't meet a certain standard. We would be naive not to admit that there is a major financial incentive to incourage termination and in a public health system, the government that encourages prenatal testing is going to financially gain from terminations in the medical AND educational system.

A wise prof I know told me that she thought that every termination of a disabled fetus should result in a transfer of funds to support children with disabilities. In this way, society would never gain from the choice.

Dear Anonymous -- thank you very much for your message. You raise very important questions about how governments gain financially (through health and education savings) when fetuses with genetic conditions are aborted.

And I think the pressure in our culture for women to undergo prenatal testing and to terminate when the child has an identified problem is intense. I hope to write more about my experiences with prenatal testing in the future.

Can you share a link to the writings of the prof you mentioned? Thanks! Louise

Also anonymous,

Thanks for the comment. I have had friends with various prenatal situations--anencephaly, in one case a mom whose water broke early--in which a doctor pressured for termination. In the case of the mom whose water broke early, at 17 weeks, she carried the baby to 29 weeks and her daughter was born 4 weeks ago. They still have a long road ahead, but they were very grateful that they were truly given the right to choose life for their child. The first hospital they went to would not allow them to continue the pregnancy, however, so they had to move to a different facility. Anyway, all this is to say that in a country where abortion is legal and supporters of abortion are called "pro-choice", we need to make sure that the medical profession is willing to uphold the law that allows a woman to choose to keep her baby, not just the choice to terminate the pregnancy.
Amy Julia

What a lovely, thoughtful post...such a clear view of what can sometimes be clouded with rhetoric. Thank you!