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.
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Tags: Amy Julia Becker, health, prenatal testing, What Every Woman Needs To Know About Prenatal Testing | Categories: Autism, Cerebral Palsy, Children With Special Needs, Disability, Down Syndrome, Must Read, SPD, Special Needs, Special Needs Parenting, To The Max