“Your baby did not die for nothing,” Rebekah said, looking up at the monitor so Kim would not see her tears. “Your baby was a messenger to us.”
This is how a friend who specializes in high-risk obstetrics attempts to comfort a grieving patient when she delivers a stillborn baby, as portrayed in my novel Catching Babies.
This bedside homily is small succor in the face of unspeakable devastation. But the idea that one family’s heartbreak will contribute to medical research and in some remote but real way help spare families in the future is often the only comfort an OB/GYN or nurse-midwife has to offer.
Which is all the more reason to celebrate this week’s tremendous news about HIV: this time, the messenger baby lived.
According to reports, an infant was born in Mississippi with the virus that causes AIDS, given aggressive doses of the anti-viral medications known to contain — not cure — the disease, and is now disease-free at two-and-half years old. It is the second known “cure” of an HIV-positive patient, and there are no words to describe how exhilarating it feels to read or type those words for anyone who came of age during, or lost friends to, the ugly and terrifying scourge of AIDS.
So take a moment to savor it. A baby with HIV has been cured. No viral load. Disease-free. Yes!
As with too much else about medical progress – and the crapshoot that is drug discovery itself – the baby’s “cure” is the result of serendipity, one bold doctor’s hunch, an uncontrolled experiment. It may be the beginning of the end of the disease – or it may not be replicable. But it is a place for doctors to start.
This baby is indeed a messenger.
Missing in all reports I’ve seen on the case is its other, much more somber message: the baby’s pediatrician discovered the cure by accident because it fell through the cracks of our health care “system.” It never should have been HIV-positive in the first place. The baby’s mother reportedly received no prenatal care, had no contact with the health care system until she was in labor, and said she did not know she was HIV-positive.
As part of our 30 years and counting struggle to find a definitive cure for HIV, we have figured out how to block its spread on several fronts. We have driven down the rate of transmission from pregnant patient to fetus to near zero, through the aggressive use of drugs, automatic (though disputed) use of c-section for delivery, and no breastfeeding.
The HIV messenger baby had none of the benefit of those drugs before its mother finally presented and delivered. But it did have the benefit of a physician who moved aggressively and presumptively.
If life is full of ironies — another homily used to brace people against misfortune — those in health care tend toward the bizarre and bittersweet, and this is the perfect example. If the HIV-positive mother had had access to a first-world health care system — you know, one with universal coverage — her baby would not have contracted the virus and we would not have discovered a drug regimen that may prove useful in helping all infected babies going forward.
People routinely falling through our rotten health care safety net results in untold human suffering and ought to be a cause for collective national shame. But it will apparently produce the odd miracle. If so, there is a good chance Mississippi will produce a few more: it is one of 16 states refusing to expand its Medicaid program under health reform. (Eight others are not sure if they will go the way of Mississippi, leaving the uninsured to fend to themselves, or pay the apparently steep political price of embracing Obamacare.)
As with the HIV messenger baby, much of what is at stake involves extending medical care for those many like to refer to as “the unborn.” The bulk of Medicaid spending – net of what the program spends on long-term care – involves pregnancy and childbirth. Fifty-three percent of Medicaid’s hospital bills are for childbirth and newborns.
Perhaps this is the baby’s other message, especially to those who claim to care so much for the “unborn” while crusading against Obamacare’s attempt to expand health coverage to all other Americans.
Health reform may be a political football for politicians, but for those whose start in life will be rough enough, it is not a game, and the next baby may not be so lucky.
J.D. Kleinke is a pioneering health care information entrepreneur, medical economist, author, policy expert, and business strategist.