“Last question,” the woman from the insurance company said. Good, I thought; I was eager to get back to seeing patients. “How long have you been taking care of Sarah?” “I’m not sure,” I replied, “How old is she?” “She’s 34.” “Then I have been taking care of her for 35 years.” “Doctor, I’m not sure you heard me correctly; she is only 34.” “I heard you perfectly,” I retorted, “She has been my patient for 35 years!” With that, the woman’s tone became irritated. “Doctor, that’s impossible!” With an equally irritated tone, I said, “Think about it,” and hung up. It is disconcerting that in the 21st century, a health care professional cannot imagine a doctor caring for a woman and her unborn baby, delivering her, and then caring for mother and child for most of their lives. This model has been routine for family practitioners and for many years was the standard of medical care in this country. Ben and Pauline, Sarah’s parents, had married in their late thirties and desperately desired children. We tested, followed calendars, and even tried medicines; Pauline did not want in vitro fertilization. Just when it seemed hopeless, Pauline missed a period, and came to the office complaining of sore breasts and morning sickness. It was a thrill for me to confirm the pregnancy. All pregnancies are precious, but this one especially so. Pregnancy and delivery were uncomplicated, but after delivery, when I examined Sarah for admission to the Nursery, I found her head circumference was smaller than her chest—the reverse of the norm. I was concerned, but then remembered the proud father’s small head. “Familial,” I said to myself. During her second night in the nursery, Sarah had a seizure. We called Children’s Hospital and they sent an ambulance with a doctor to take her downtown. Three days later she was home, with a diagnosis of microcephaly. A few days later, in the office, I had to explain to Ben and Pauline that their perfect little daughter would probably be slow in development, especially intellectual development. It was a tough conversation. Painting neither a rosy future nor a gloomy one, was a tough journey for me. They took it bravely, relieved that they would be able to keep and raise her. Sarah means “Princess” in the Bible; she would remain their little Princess forever. Their faith and love was incredible to see. Pauline was a bit more nervous than most new moms, mostly about whether she was doing a good job. She called me daily, Monday thru Friday for a year for a simple reassurance that she was doing things properly. I didn’t have the heart to talk to her about the frequency of the calls, thinking they would stop. They didn’t. So after a year, I sat her down and mentioned what a good job she was doing; Sarah was thriving, and my affirmation each day was not needed. We agreed that she would only call about important issues. For the next three years, she called two to three times per week, which was tolerable. (In many decades of practice, I have never had a similar situation.) Sarah was delayed in her developmental milestones (walking, talking, toilet training), but she finally got there, and around age six, she was enrolled in a “sheltered” school. Our town was blessed to have such an organization, a tremendous resource for many of my patients. Pauline was somewhat lost with Sarah away for a few hours a day, so she volunteered to drive the van transporting the children each day. Sarah still gained independence and social skills-development, while Pauline gained connection with Sarah’s teachers. Eventually, Sarah needed more advanced teaching and training, and entered St. Colletta’s School. Founded by Cardinal Cushing, who did not allow use of a classification system, there were no “retarded,” “developmentally delayed,” or “spectrum” children at the school. Rather, they were all his “exceptional children;” he would not tolerate any other terms. He bestowed love and organizational support and money on the school and it continues his good work to this day. Sarah thrived. In my office is a picture of Sarah going to her senior prom with a classmate, he in a tux and she in a gown with upswept hair, and a beatific smile on her face The picture brings tears to my eyes every time I look at it. Following St. Coletta’s, it was back to the workshop to do piecework each day, and Sarah seemed happy. Her medical situation was not good, though; she became profoundly hypothyroid, and gained an enormous amount of weight. The weight gain put undue pressure on her congenitally displaced hips, and she ended up in a wheelchair. In her thirties, we were advised that an operation could rid her of the wheelchair, which she wanted desperately. Ben and Pauline reluctantly agreed. Sadly, Sarah suffered complications post-op and died. I always believed her endocrine system and pituitary function were impaired beyond the thyroid, and the surgery and anesthesia stressed her ACTH-adrenal system beyond capacity. Ben and Pauline were heartbroken but there might have been a whisper of relief that her suffering was over; she would be well taken care of in God’s hands. My children, growing up, had Cathy, a Downs child, in their playgroup. Cathy taught them kindness and compassion and empathy. They learned about playing fair, and about the importance of support for the less fortunate. These lessons, absorbed at a young and impressionable age, cannot be learned from parental lectures or in the classroom. And I think my children, as evidenced by their adult lives, have learned the lesson of the value of giving, volunteering, and the mitzvah. We all are wired such that doing good works makes us feel good. And that is the way humankind is supposed to live. Together. Where would we be without the Sarahs and the Cathys—the exceptional ones—to teach us? Source
