Most of the time, my daughter doesn’t share details of the overnight shifts that she spends as a nurse in the ICU (Intensive Care Unit). Sometimes the care that she and other medical professionals give allow their patients, with God’s grace, to graduate from the ICU on the road to recovery. Other times, she is honored to tend with dignity to those losing the battle for life. Many of her patients are not awake and communicative; she often doesn’t get to uncover the unique individual hidden behind the person in her charge.
Last week she did share a story. While the natural human emotions of medical professionals need to be controlled for them to do their job, one patient’s plight pierced through my daughter’s defenses. It was not the first time she cared for a young man dying from sickle cell anemia, and his fate upended her equilibrium.
In an anguished voice, she asked me, “Why don’t people get tested so that their children won’t die?” I understood the history behind her question. As a high school student, my daughter along with all her classmates (and students in most religious Jewish schools) underwent a blood screening test to reveal if they were carriers for certain illnesses that are prevalent in the Jewish community. The organization that runs the screening emerged from the pain of a rabbi, Joseph Ekstein, who watched, devastated, as four of his young children died from Tay Sachs disease. Wanting to spare others similar sorrow, in the 1980s he began promoting widespread genetic testing. Since then the organization that carries out his mission has expanded to test for an increasing number of fatal and debilitating recessive genetic diseases to which Jews are disproportionally disposed.
How does it work? The concept of testing high school students presupposes certain social norms. For this reason, religious high schools provide a natural platform. For the most part, these students belong to a culture that frowns on social dating. Down the road, many of them will meet their spouses through introductions by family and friends or through matchmakers. Even if they do meet someone at a social gathering or other venue, the expectation is that any incipient relationship hinges on getting to know one another with marriage as the aim. Furthermore, physical contact leading to out of wedlock pregnancies is not the norm; marriage and children go together.
Once tested, the students are not given any genetic information. Instead, they are given an identifying number. When they begin to court for marriage, ideally before ever even going out on a first date, they, or their parents, call a designated phone number with their own identifying code as well as the number of the person they are meeting. If neither or only one of the individuals is a carrier for one of the serious genetic diseases, the caller is blessed with wishes that the courtship goes well. If both individuals are carriers, the caller is advised not to pursue the meeting. Even if the couple has already met, calling at an early stage in the process means that while relinquishing the relationship may be disappointing, it is a small price to pay compared to the potential tragedy that could ensue.
Why am I writing about this? Sickle cell anemia is prevalent in both the African American and Hispanic communities. I read that the trait for it is the most common inherited blood disorder in the United States. I know that among my Musings’ readers there are pastors whose congregations include many Hispanic and African American families, as well as individuals from those communities. These churches often promote courtship rather than dating. Perhaps genetic testing is already encouraged; I don’t know. I do know that in the observant Jewish community it has become rare to hear about a baby being born with Tay Sachs. The testing has been wildly successful in eradicating this particular affliction. I write in the hope that sharing an experience from my community can help eliminate heartbreak for other groups.