Frank: During my fifty years of practice, I participated in the care of thousands of pregnant women and have attempted to answer the many questions that each patient invariably wants answered. While these questions are often specific to each patient's pregnancy, one common question usually surfaces at some point in our discussion, ''Is my baby, okay?'' Because it is so difficult for me to define ''Okay'' this question has always been a tough one for me to answer.
At the heart of this question lies a pregnant patient's desire to know if her unborn child will be perfect (normal and healthy), a very reasonable concern. Once again, however, defining perfect is not an easy task.
Most pregnant women do not realize that approximately 2% of the four million births each year in this country involve the delivery of a child with a significant congenital defect. That translates to one out of fifty births! These birth defects include hundreds of diverse types of anomalies such as spina bifida, heart abnormalities, limb deformities, metabolic disorders, and chromosomal abnormalities such as Down syndrome.
When you consider that each of us begins with the union of sperm and egg, which creates one cell and this one cell continuously divides to create the trillions of cells that result in a living child, it is truly a miracle that any of us are born, much less that we are born perfect.
It is with this in mind that I explain to patients that each birth is a miracle and that the uniqueness of each of us is what makes us perfect. I also try to explain that normal is in the eye of the beholder. The gift of life can be ''perfect'' even in the presence of serious problems.
Mark, I am sure that you have dealt with families whose child was born with problems and needed guidance in how to deal with such a situation. How have you dealt with these families?
Mark: Frank, you have introduced the most sensitive religious topic I can imagine: The worth of each new life, the value of every new soul. Who decides whether that newborn child, or fetus, is “perfect”— or “perfect enough” — to guarantee both their spiritual sustainability, as well as physical viability, to fully welcome their birth as nothing short of a miraculous event in our lives?
Some faiths believe that the decisions whether to choose to bring such a child into the world is not ours to make, that God alone makes that decision. The wisdom offered by these faiths is that “God knows us — each of us, individually, before we are even born.” As such, each child is of immeasurable worth, each child is created through God’s plan and agency, and as such, we are commanded to welcome that child and to nurture them towards maturity, no questions asked, no matter what. It presents every prospective parent with an often heart wrenching decision.
Judaism offers a distinctly different view: That the fetus is to be viewed as a potential human life, but not a viable, independently functional human being, until the majority of the infant has appeared from the mother’s womb. Only then is it viewed as a complete and viable living being.
The distinction here is critical, because it affords each set of parents the ability to be partners with God in making the painful decisions should their potential child be somehow “not okay,” and therefore “less than perfect.” The decision as to whether to bring that child into the world, or not, is one left up to those parents to make. That being said, the choice, in my experience, is never easy: it is among the most brutal, most difficult decision we will ever have to make. Who decides the worth of each life and the value of each soul? How do we reach that determination with a peaceful heart and a comforted conscience? Our Jewish faith can offer such a path of options to make such a decision easier to make, and certainly easier to bear its consequences.
Frank, your reflections on all of this?
The Jewish Observer is published by The Jewish Federation of Greater Nashville and made possible by funds raised in the Jewish Federation Annual Campaign. Become a supporter today.
Frank: To let you know my reflections on what you have just written, I must get personal. My son Tommy and his wife Lisa were expecting twins in 2003— a girl and a boy. I vividly remember the excitement as my wife Julie, and I waited during the delivery and cried with joy as we each held a child in our arms in the recovery room. Marly and Seth were perfect. What dreams and expectations we held for these two precious bundles of joy!
Several hours later, however, we were confronted with the fact that Seth carried a diagnosis of Down syndrome while his sister Marly did not. Our family was filled with emotions, from the high that came with the birth of the twins to a low at learning of Seth's disability and knowing that he would be different with possible life-long problems.
Later that evening, holding Seth in my arms and gazing into his angelic face, I was overcome with an instant and unconditional love for my grandson. As the tears rolled down my cheek, I understood that despite his diagnosis, to me and those who love him, Seth is a perfect child, to be loved and nurtured, the same as his sister Marly. Our dreams and expectations for him may now be different from those for his sister, yet they are dreams and expectations, nonetheless.
To me, Seth was perfect. His smile lights up a room and his laughter brought warmth to all who held him. He loved to cuddle and gaze into the eyes of those who held him, and he embraced his sister with what can only be described as pure affection and love.
Seth is one of many children who are born with birth defects and complications, yet, like so many others, Seth has embarked on a journey we call life. That life will be filled with challenges for him and his family, yet that is also true of each of us as we embrace life with its ups and downs.
As we enter a world in which more genetic information is available for us to consider in defining who is a perfect child, I hope we have room in our world and hearts for those like Seth who are challenged and different, because challenged and different can still be perfect.
Rabbi Mark Schiftan can be reached at mschiftan@aol.com
Dr. Frank Boehm can be reached at frank.boehm@vumc.org