“Failure to thrive” is a polite medical term for a nightmare scenario. Imagine being first-time parents of a newborn and, despite lavishing upon her about as much care and nurturance as a reasonably prosperous New Hampshire family can offer, watching your baby literally starving to death as her doctors insist they can find nothing wrong.When this happened to us in early 2002, my wife took to turning on all the appliances in our house so that the noise would drown out the desperate wailing of our infant daughter. It was the only way this sorrowful but exhausted first-time mother could get any sleep.
Then it finally occurred to someone at the hospital to do a simple test, which readily showed that our daughter was born with cystic fibrosis. CF vies with sickle cell disease as the nation’s most common life-threatening inherited chronic illness. One in 26 people is a carrier of a CF gene; a child born to two carriers has a one in four chance of having the disease.
Our daughter is very fortunate. The day after her diagnosis, she began taking the digestive enzymes that were not reaching her small intestine, and the day after that she began thriving. Today she is a lively and beautiful kindergartener. The median life expectancy for people with CF has reached 38 years and is steadily growing, thanks to the splendid work of the Cystic Fibrosis Foundation and the CF centers around the country that work under the foundation’s aegis.
No New Hampshire family will ever again endure what we endured. In 2006, New Hampshire heeded the joint recommendation of the CF Foundation and the National Centers for Disease Control and Prevention to begin screening every child for CF at birth. We’ve since moved to Vermont, which will begin newborn screening for CF in March 2008. Nearly 40 states have now decided to screen for CF.
Unfortunately, my former home state of Maine refuses to take this step. The relevant agency, the Maine Center for Disease Control and Prevention, agrees that the scientific and public policy case is solid, but won’t add CF to its newborn screening program because the place is under a hiring freeze.
If I still lived in Maine, I would be storming the Bastille with torches and pitchforks over such bureaucratic stubbornness. While I don’t doubt that the Maine CDC could use more help, its New Hampshire counterpart added no new staff when CF became a successful part of its newborn screening program. Likewise, Vermont discerns no new personnel needs to start CF screening.
Maine is blessed with two excellent care centers accredited by the CF Foundation – at Maine Medical Center in Portland and Eastern Maine Medical Center in Bangor. But they can’t help people who don’t know they have the disease. It is especially heartbreaking to read about people who aren’t diagnosed for years and years, because the scientific evidence is so solid: The earlier CF is diagnosed, the healthier and more long-lived a person is.
Ideally, these words would come from a Maine father rather than a Vermont one. But the Maine families who need newborn screening for CF don’t know it yet. In their name, I call on Dr. Dora Mills, the director of the Maine CDC, to do the right thing.
Recent advances in CF care are astonishing and offer every prospect of a fully effective treatment, if not an outright cure, well within my daughter’s lifetime. But the treatment, and the cure, cannot reverse the permanent and life-threatening lung damage that CF causes -- but that treatment from birth so significantly lessens.
The prospects for curing CF are so good that, in my view, on the day Maine starts screening newborns for cystic fibrosis, the last child will have been born in Maine who will eventually die of this awful disease. Until then, Maine babies will suffer as my daughter did and Maine itself will, in this sense, be failing to thrive.
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