HIEBERT: Premature dismissal

In the coming weeks, Christmas lights will turn dark streets into illuminated fantasies. However, the display of house after house adorned with lights makes me think of families spending the holiday far away from Christmas cheer in the Neonatal Intensive Care Unit (NICU) where incubator after incubator, each enclosing a baby barely larger than an adult hand, glow in dim hospital light.

When my brother was born prematurely, he spent his first two weeks in the NICU attached to wires, incessantly beeping machines and a ventilator his life depended on. My mother barely got to hold to him, and our excitement over a new addition to the family quickly transformed into fear and despair.

My story is a Christmas story, though, because my brother is now a 4-year-old bundle of sunshine who sends me artwork to hang in my room and only wears Mickey Mouse T-shirts.

Despite the fact that 13 million babies are born too early — and one million of them die before their first birthday — worldwide each year, premature births remain overlooked. But incidents of prematurity have been on the rise since the early 1980s. And since then, we’ve made limited progress in discovering the many causes of premature births.

In this country, we like to have explanations for problems. So we usually attack medical questions with urgency and ample resources. But prematurity hasn’t met the same response.

John F. Kennedy’s son Patrick was born with respiratory distress syndrome, the same disease my brother had. Patrick could not be saved, but his death inspired improvements in technology, and, over 40 years later, my brother overcame the disease. Progress is possible. So why has the quest to discover and learn not propelled efforts even farther?

One reason is that such an issue draws only highly selective attention. As should be expected, most advocates for continued funding for infant health are moms — with a few dads here and there. It may seem like an irrelevant issue to everyone else, but in fact prematurity affects everyone in society. Acting to fight prematurity would lead to healthier future generations and social efficiency gained by fewer complicated births and long-term disabilities. Babies are the future, and an investment in their health is an investment in the future for everyone.

The pure innocence of babies is enough to make some care, and many current advocates feel obliged to be the voice for infants, who cannot speak for themselves. Infants cannot describe their pain — making it that much harder for adults to witness their suffering while only imagining the severity. Most people who have held a newborn can attest to the human instinct to want to protect and nurture the most vulnerable.

For people who care more about the present than the future, the complications caused by premature birth in America carry a price tag of $26 billion of your tax dollars each year. Most people who lose sleep over funding for healthcare never even consider the implications of prematurity. For what it costs to pay for one premature birth, we could cover 12 healthy ones. The mothers who are most at risk to have premature births often are not covered by health insurance, so medical costs fall to various levels of government financing.

However, persuasion and numbers only go so far. Most people do not become strong advocates for healthy babies until they have experienced or closely observed the emotional and life-altering outcomes of prematurity. I became a volunteer for the March of Dimes, the leading non-profit supporting the health of moms and babies, in eighth grade, the year my fifth sibling was born prematurely. My dedication to the cause was reaffirmed this year when my little sister also spent two weeks in the NICU after a premature birth. My mom, like half of the moms who give birth prematurely, did everything right. No one can tell her why she did not go full term.

I hope others don’t have to experience the heart-wrenching effects of seeing their children — or those of friends and relatives — born prematurely before they realize the magnitude of prematurity. Birth and subsequent birthdays are supposed to be some of the happiest and most celebratory times in life. For my family, the premature births of my youngest siblings were stressful and trying times. Only when my siblings safely entered the warmth of our home did we truly celebrate the occasion. Simple things like Christmas lights often make me reflect on the families who never experience this joy — and relief. I hope the current darkness surrounding prematurity is simply foreshadowing the day when every baby has a healthy start to life.

Lindsey Hiebert is a freshman in Pierson College. Contact her at lindsey.hiebert@yale.edu.

Comments

  • The Anti-Yale

    Yours truly, a 7 1/2 month baby, spent his first days with yellow jaundice shut in an incubator.

    The year was 1944, the day of delivery, December 28.

    My mother had had two miscarriages previous to my premature delivery. My ex post facto analysis of the cause: She would not bring children into a world where a World War seemed to have no end in sight.

    The doctors had a different idea: They trained my father to give my mother an estrogen shot every day and instructed her to give up cigarettes and to remain in bed for the pregnancy.

    Voila ! The Anti- Yale.

    • Yale12

      The YDN comment boards, or, Paul Keene’s personal biography.

  • River_Tam

    Beautifully written.

  • lacking_class

    Very well said Lindsey,
    Working in the Pediatric ICU at YNHH, while not mainly dealing with newborn children, the pain and suffering of the families who must spend their holiday worrying for the life of their child is not lost on me and I can completely relate to your compassion.
    I applaud your effort and hope that infant care and study receives the funding it needs and deserves, You have inspired at least one more advocate. Thank you.
    -Drew

  • CharlieWalls

    Several years ago, my best friend — a practicing pediatrician — and I were discussion the high rate of infant mortality in the US. He said that much could be attributed to premature births. And these in turn could be attributed to lack of sufficient, wide spread, prenatal care for expectant mothers. This seemed to be well known in his profession. Hence, I am surprised the author here avoided a characteristic in our country giving rise to premature births. Prevention by more general healthcare is much more helpful (and less expensive) than neonatal care after the fact.

    • River_Tam

      If a baby is born before 24 weeks in the UK, it is not counted as a live birth for the purpose of infant morality statistics, even if it is alive at the time of birth. France allows the physician to define “viable” (which is medically considered to be after 24 weeks in the US at least). Netherlands doesn’t consider any premature babies before 25 weeks to be a live birth. Switzerland requires the babies to be 30 cm at birth. The US is one of the few countries that uses the full and unaltered WHO definition of a live birth.

      This is a large part of its increased “infant mortality rates”. The rest can be accounted for by the fact that the US sees a decreased rate of abortion of high-risk pregnancies.

      • CharlieWalls

        This correction via ‘live births’, in fact, is doubtfully sufficient although believed by some. See a real study at: http://www.cdc.gov/nchs/data/databriefs/db23.htm For instance, “In the United States and in 14 of 19 European countries, all live births at any birthweight or gestational age are required to be reported.” And, “The main cause of the U.S.’s high infant mortality rate when compared with Europe is the very high percentage of preterm births in the U.S.” [see link]

        • River_Tam

          Except that the definition of “live births” varies by country For instance, Germany excludes the “voluntary muscle movement” part of the definition. Switzerland (not mentioned in the CDC study) excludes both voluntary muscle movement and umbilical pulsation.

          The high percentage of preterm births in the US is due in part to decreased rates of abortion of high-risk pregnancies, as well as other factors including race.

  • CharlieWalls

    The correction via ‘live births’, in fact, is doubtfully sufficient although believed by some. A CDC study (NCHS Data Brief, No. 23, Nov,2009) considered fair comparisons. For instance, “In the United States and in 14 of 19 European countries, all live births at any birthweight or gestational age are required to be reported.” And, “The main cause of the U.S.’s high infant mortality rate when compared with Europe is the very high percentage of preterm births in the U.S.” Google “Behind International Rankings of Infant Mortality: How the United States Compares with Europe”

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