Posts Tagged ‘ Amy Julia Becker ’

Four Myths About Prenatal Testing

Thursday, April 11th, 2013

This guest post is by Amy Julia Becker, author of the new book What Every Woman Needs to Know About Prenatal Testing: Insight From a Mom Who Has Been There and A Good and Perfect Gift: Faith, Expectations, and a Little Girl Named Penny. She lives in western Connecticut with her husband and three children. 

When I was a pregnant 28-year old, I didn’t hesitate as my doctor offered a screening test for various genetic conditions. I figured it couldn’t hurt me or my baby, and that the information the test provided would most likely allow me to check a box off my mental list. I was hoping for reassurance that my child was and would be healthy, happy, and who I expected. As it happens, despite the fact that the prenatal tests suggested otherwise, our daughter was diagnosed with Down syndrome two hours after birth. Since that moment, I’ve spent a lot of time thinking about sticking out my arm for a blood draw eight years ago. In retrospect, I wish I had known how problematic my assumptions about prenatal testing were, so my hope now is to offer other women a chance to confront some myths surrounding prenatal testing:

Myth #1: Your doctor can tell you everything you need to know about prenatal testing.

Two hours after Penny was born, a pediatrician and a neonatologist told us that they suspected she had Down syndrome. I hardly heard their words, but later we received a packet of information that listed medical concerns for children with Down syndrome, and I read about her likelihood of developing celiac disease, childhood leukemia, intellectual delays, vision and hearing impairments. But the doctors couldn’t tell me much about what has proved to be far more important to our life as a family—Penny’s personality, the way she would fidget like her father and jump up and down when receiving a new book, just as I did when I was little. Doctors can provide medical information about the conditions that might be diagnosed through prenatal testing, but most doctors are unable to provide information about the social and emotional context for children with disabilities.

A study published in the American Journal of Medical Genetics demonstrated that doctors and genetic counselors value clinical information most when presenting a prenatal diagnosis, even though parents report valuing information that details the social context for Down syndrome. As numerous studies attest, what parents want and what doctors and counselors provide often differ. Expectant parents need more than medical knowledge when making decisions about their families.

Myth #2: The best thing for every pregnant woman is to pursue prenatal screening.

When I was pregnant with Marilee, my third child, I chose normal ultrasound exams and a fetal echocardiogram, but I declined all other prenatal tests. Because I had already given birth to one child with Down syndrome, there was a higher than usual chance that my other children could be born with Down syndrome, but I also felt confident that the testing we had pursued would give us all the information we needed in order to welcome her into the world.

The American College of Obstetricians and Gynecologists recommends that doctors offer prenatal screening tests to all pregnant women, regardless of age or family history. Once the offer has been made, the decision about what route to pursue is up to you. If you want the option of abortion in the case of a prenatal diagnosis, then you will probably choose screening which might lead to more invasive testing (an amniocentesis or corionic villa sampling). But if you don’t want the option of abortion, there are other factors to consider. Perhaps you would like this information so you can feel emotionally prepared. Perhaps you have other kids at home and might need to make different preparations if your baby might be in the hospital for a longer stay. Perhaps you are afraid that other people would put pressure on you to abort so you don’t want the information. Perhaps you suspect that this type of information would be difficult at any point but easier once the baby has been born.

Myth #3: Prenatal testing is just a guise for selective abortion.

Although at least 70% of American women who receive a prenatal diagnosis of Down syndrome choose to terminate their pregnancies, and even more terminate with diagnoses like anencephaly, Edward’s syndrome, and Patau syndrome, prenatal testing can serve as a way to prepare well for the birth of a baby with a disability. Mona Patel, for instance, wrote about the ways prenatal testing that identified Down syndrome allowed her to prepare for her son’s birth: “Knowing about the diagnosis gave me time to learn. We spoke with a genetic counselor and explored books and internet resources. We contacted people who had children with Down syndrome and eventually attended a local support group meeting.” Many women who have chosen to continue their pregnancies after a prenatal diagnosis are able to find emotional and social support while also preparing on a practical level during the later months of pregnancy.

Myth #4: You can predict the type of child you will have. 

Ethicist Stanley Hauerwas once said, “The only difference between parents of kids with [intellectual disabilities] and other parents is they find out a whole lot sooner they didn’t get the kid they wanted.”

Prenatal testing offers a false sense that knowing the chromosome count of a baby can tell us something positive or negative about who that child will be. But every life that comes into this world does so with both limitations and possibilities. Every kid will be a burden on his or her parent. And every kid, no matter their limitations, can be a blessing.

When Penny was born, I had to confront my own false assumptions about prenatal testing, and, more importantly, about the child I thought I wanted to have in our family. Now I know that more advanced prenatal testing could have given me a diagnosis and offered me statistical probabilities about the medical and social supports our daughter would need. But I also know that even the most advanced prenatal testing would have offered me very little to predict the sorrows and joys of life with this particular little girl in this particular family. There’s no test for how much love our hearts can hold.

Images courtesy of Amy Julia Becker

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What You Can’t Tell About My Child With Down Syndrome Just By Looking

Tuesday, March 20th, 2012

World Down Syndrome Day 2012 is tomorrow, Wednesday March 21, and events will be happening around the globe. The event on this blog: A guest post by Amy Julia Becker, a writer and mom of three. Her oldest daughter, Penny, has Down syndrome. Amy Julia blogs at Thin Places; her most recent book is A Good And Perfect Gift: Faith, Expectations And A Little Girl Named Penny. No matter what kind of special needs your child has, you’ll relate to what she has to say.

Two hours after our daughter was born, she was diagnosed with Down syndrome. The pronouncement shocked and saddened me, but I also felt confused. I thought all people with Down syndrome looked the same: Flat nose. Thick neck. Epicanthal fold of skin around the eyes. Short stature. Cherubic expression.

But I couldn’t see it. When I looked at our daughter, I saw pudgy cheeks and deep blue eyes and long eyelashes and a full head of black hair. I didn’t see Down syndrome. I saw Penny.

Whenever we went out together, I wondered—can people see the little girl that I see? Or are they only able to see a label, a diagnosis, a set of assumptions about who she must be or what she might not be able to do? I imagined a legal document that had been stamped with big red letters, “DRAFT.” And I wondered if people would only be able to see the big red letters, the markers that she did hold in common with other children with special needs. I wondered who would be able to read the letters underneath.

There are days when I have found myself reading those red letters: When Penny was two and I assumed she was throwing her cup on the floor due to a delay in development (I asked about it, and her therapist cocked her head and said, “Or she’s throwing her cup on the floor because she’s a two-year old”). When I thought it was because of Down syndrome that she was playing by herself during a play-date (and then I discovered that many first-born children do the same thing). When I attributed her misbehavior in school to learning disabilities (and then we put tubes in her ears and she could hear her teachers and the misbehavior disappeared).

But for the most part, I read the fine print. I see the sweetness of a little girl who wakes up every morning and whose first thought is to cuddle with me. The empathy of a little girl whose eyes well up with tears when one of her siblings starts to cry. I see the tenacity of a kid with low muscle tone and pronated feet who volunteers to go on stage and perform when the Irish dancers come to school. The perseverance of a child who asks every night, “Can we do some reading homework?” and who is, slowly, one word at a time, beginning to read whole books out loud.

I see the reasons to rejoice in her particular loveliness, and I see the challenges she faces. I see a world that rejects her because she will never conform to cultural ideals of beauty or success. I see a world that ignores her because she will never be fast enough or smart enough. I see the things that will make it difficult for her in the future—the trouble she has with math concepts, her insecurity in many social situations, her unwillingness to try new things.

A friend of mine has a poster on her wall with hundreds of children’s faces. Each child is dressed in a black t-shirt. Somehow, despite the uniform dress, or perhaps because of it, the striking result is not a sea of faces that look the same but rather a wall of particularity—the playfulness of that girl’s smile, the serious look on that boy’s face, the shaggy hair, the gorgeous eyes, the straight nose, the high forehead. It’s a wall of human diversity, and yet every one of the children has Down syndrome.

Penny is six years old now, and now I can list the physical markers of Down syndrome that are present in her body—her beautiful eyes, her pixie nose, her short arms, her thin hair. And now her diagnosis neither shocks nor saddens me. But one thing has remained the same since that first moment in my arms in the hospital. When I look at our daughter, I don’t see Down syndrome. I just see Penny.

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