Subha Speaks Out
A medical error reveals the healthcare disadvantage many expecting women of color face.
We all know that systemic health inequities exist because of socioeconomic disparities. But did you know that they also exist and impact multicultural communities disproportionately? I mean, even the wealthy members in the African-American, Hispanic, Asian, South Asian and Native American groups?
Early in my first pregnancy over 30 years ago, Jim and I were an eager couple experiencing each milestone with wonderment and joy. Both my parents and his were going to be grandparents for the first time, and you can only imagine the excitement in the family.
An early test in the third or fourth month of pregnancy is called the Alpha-fetoprotein test. A negative or normal test usually means the baby is healthy. A positive test with a high AFP could suggest a birth defect like spina bifida. Mine was over 2.5 times the normal level! What followed was an incredible and emotional experience for us. The doctor sent us to a genetic counselor, who gave us every excruciating detail of what could be wrong with our baby. The OB- GYN I was seeing suggested I get an amniocentesis done to further test the amniotic fluid to confirm the genetic disorder. You see, as a Type 1 diabetic, mine was a high-risk pregnancy to begin with, and we were utterly devastated by the diagnosis.
Next came the drama with two attempts at trying to perform an amniocentesis. Both times the needle inserted into my belly would bend because my uterine wall muscle was too hard. Ultimately they just gave up. We went back to the genetic counselor, who recommended an abortion on the basis of the test results. Jim and I are both very strongly pro-choice. However, when it came to our baby, we both felt so strongly about keeping it that we chose not to follow the genetic counselor’s or OB- GYN’s recommendation.
If we were meant to be parents to a disabled child, we made our peace with it. We held each other and cried ourselves to sleep every night. They say that a crisis in a relationship can either bring you closer or tear you apart. This crisis, the first of many that we faced as a couple, brought us closer in a way that prepared us well for the others that followed. Each of us nursed our fear, not wanting to dump on the other, but the tears that flowed when we held each other every day needed no words of explanation. When the baby moved for the first time or kicked, we prayed and hoped that somehow there would be a miracle and it would be normal.
Along came May 18, 1988; I was induced and was in labor from 7 a.m. to 11:02 p.m. When our Tara was born, she was a beautiful, normal 7-pound, 2-ounce baby girl with a beautiful head full of hair, gorgeous blue eyes, and yes, a perfectly formed spine and brain stem! Our tears were those of gratitude, joy and wonderment. Had our prayers been answered? Had the lab got a false positive? At that moment, we banished every negative thought from our heads and simply celebrated.
A few months later, I went to see the genetic counselor. Did I mention to you that he was an Indian man? Anyway, I asked him how he could have got my results so very wrong. His answer stunned me then, and makes me angry even today! He said: “Unfortunately, Indian and Hispanic women often get very high AFP scores even though their baby is normal. The database of women we measure you against are a group of white Jewish women from Long Island, and Indians, some Asians and Hispanics seem to score high as compared to the test averages.”
When I wanted to know why they hadn’t created a database of Indian or Hispanic or Asian AFP scores, he said that they couldn’t get grant funding for it. How many Indian, Hispanic and Asian parents-to-be had aborted their fetuses based on this test and on the genetic counselor’s guidance?
When I pushed him further, he said he felt bad counseling the parents-to-be in the manner he did but was bound to do so because of legal restrictions. What a cop-out!
Jim and I were in our 20s when Tara was born. We were educated and could afford good healthcare. If we had to go through this trauma, how much worse would it be for someone without the ability to challenge a doctor’s opinion? This health inequity was systemic and impacted diverse communities disproportionately, irrespective of socioeconomic class. Thankfully, this test’s database has been updated to reflect the differences between different ethnicities. What else still remains and hurts us? Time will tell.
“How many Indian, Hispanic and Asian parents-to-be had [this happened to]?”
SUBHA BARRY Senior Vice President and Managing Director, Working Mother Media