An unflinchingly honest look at caring for a chronically ill child

 

By Dave Andrusko

dna-moleculereThe two items are related but not the same. The first is a story that ran Wednesday on NPR celebrating the latest ‘advance’ in diagnosing our unborn children. “Blood Test Provides More Accurate Prenatal Testing for Down Syndrome” is the headline.

The latter appeared in the New York Times and is an unflinching profile in the courage it requires to aggressively care for a child with a very, very serious medical condition.

There is the almost obligatory “let’s think this over” from Brian Skotko , co-director of the Down Syndrome Program at Massachusetts General Hospital in Boston, whose work we have written about many times. He told NPR’s Rob Stein

“People with Down syndrome are artists. They’re poets. They’re athletes. Their lives are happy ones and fulfilling ones. I have a sister with Down syndrome who certainly is a life coach for not only myself but for my entire family,” says Skotko. ‘If the new tests become a routine offering, then we have to start to ask: Will babies with Down syndrome slowly start to disappear?’”

But that one naysaying voice is the kind of “balance,” alas, you’d expect from NPR. With more and more accurate tests earlier and earlier, it is quite true, as Stein notes, there is less chance of needing further tests that increase the likelihood of a miscarriage. And that is even more so (presumably) from a test that only “requires a blood sample from the mother. New high-speed genetic sequencing is then used to analyze tiny bits of DNA from the baby that float in a woman’s blood when she’s pregnant.”

Stein then quotes Diana Bianchi, a pediatric geneticist at Tufts Medical Center who led the study published in The New England Journal of Medicine:”The blood test is counting sections of DNA, and if there is more DNA than would be expected, it suggests that the baby has an abnormality.”

And, of course, not only is the test more expensive, the test is not perfect.

Michael Greene , an OB-GYN at Massachusetts General Hospital in Boston, who co-authored an editorial accompanying the study, told Stein, “I’m worried that without a proper sense of perspective on the test that women may use a positive screening test as the basis for terminating what would actually have been a normal pregnancy.”

Which for pro-lifers and others who unconditionally support the full humanity of children with anomalies misses the whole point. It’s not just that women will abort even though (it turns out) their child did not have a genetic anomaly. It’s rather that, as Skotko explained, children with Down syndrome are to be treasured for their inherent worth. If their situation is accurately diagnosed with 100% certainty, that does not justify aborting them as some sort of “mistake.” Theirs is not a “wrongful life.”

The other story appeared in the New York Times a few days ago. “The Price of a Child I Wouldn’t Let Go,” by Amanda Rose Adams.

Ms. Adams does not seek our pity or our congratulations for a “job well done.” She is fully cognizant of the tremendous costs caring for her chronically sick son have exacted. But she looks them straight in the eye and understands that this is the price “measured in time, blood and treasure” for the decision she made after learning that her unborn son had serious problems.

“Our son is almost 11, and since the revelation of his critical heart defects during my pregnancy, the cost of his survival increases each year. Yes, I could have terminated my pregnancy or accepted hospice care the morning after his birth. But, I wouldn’t relinquish the child I felt and saw move inside my own body. I couldn’t give up on him just hours after he survived his own precarious birth. So we’ve fought, and that fight has a six-figure price tag.”

By “not giving up on him,” her family made a courageous decision. Ms. Adams does not address what advice she was given when the diagnosis was first made. It’s not hard to believe there was plenty of counsel that life would be “easier for everyone” if she aborted or if the family chose to passively accept his condition once he was born.

Read her essay in its entirety and remember she is writing in a forum where pro-life readers are few and far between. It is all the more heroic because she neither sugarcoats their life nor regrets she chose life for their son. In her last paragraph Adams writes

“Believe I deserve this if you want. Believe me cruel for not aborting my son, or believe me crass for speaking my truth. …Eleven years ago, I made a choice to fight for my child’s life, a choice I do not regret. Though I suffer occasional sticker shock, I willingly accept the price to keep what I hold so dear.”