Subha Speaks Out

Working Mother - - Contents -

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

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