Internist Gregg Friedman on his infant daughter's struggle for survival.
My first Father's Day as a new dad was June 19, 1995; I remember it very well. My wife and I married three years earlier. We are both medical doctors and we were both born and raised in Miami, Fla. We grew up less than 13 miles apart and attended the same medical school. My future father-in-law, an otolaryngologist, performed surgery on me twice as a child.
Despite our similar backgrounds I never actually met my wife until our first date in February 1991 when we were set up on a blind date. It was love at first sight and in May 1992, we were married. I spent the first three years of our marriage setting up my private practice, and my wife was busy as a pathology resident.
In March 1995, our first child, Rachel, was born. The pregnancy was uneventful, but during her birth I noticed a little meconium. In addition, I was concerned that her APGAR scores were a little low. The OB/GYN advised us not to worry. The pediatrician checked Rachel in the hospital and gave her a clean bill of health. Perhaps we were just overreacting to the birth of our first child. I remember learning in medical school that sometimes having too much medical knowledge can be a bad thing; you tend to anticipate the worst. We took Rachel home, but in less than three months she developed severe inspiratory stridor which became progressively worse. As new parents, we were obviously very concerned.
First we took her to the pediatrician, who diagnosed laryngomalacia. He advised us not to worry and told us that she would quickly grow out of it. When things did not improve, we consulted with multiple specialists and performed numerous diagnostic tests, X-rays, CT scans, blood tests etc., without any clear answers. Even though my wife and I are both medical doctors, the situation was overwhelming. Eventually, we visited a pediatric otolaryngologist who did a laryngoscopy on our three-month-old baby. He decided not to pass the scope beyond her vocal cords. Once again, we were told to take her home and not to worry. We still had no clear diagnosis - but what we did not know was that just below her vocal cords, a massive tumor was rapidly growing and closing off her trachea. Our poor baby was suffocating and we did not even know it. Every breath became a struggle for her.
Several days later while driving in our car, Rachel completely stopped breathing. She was pale with blue lips and her body went limp. We immediately stopped the car in the middle of a busy road and began to do CPR on the side of the street. Many doctors must perform CPR at some point in their career, but I can tell you that it is a very different experience when you are performing CPR on your own child. The CPR seemed to go on for an eternity, and it was not working. I remember giving up and crying to God, "How could you let this happen?" Fortunately, my wife, who is a lot tougher than me, did not give up on the CPR, and somehow, she was able to get Rachel breathing and restore a pulse.
We went directly to the closest hospital, but since her condition was critical, she had to be transferred to the University of Miami Medical Center. It was ironic because this was the same place where I was born, and the place where both my wife and I attended medical school. Rachel had obstructed 95 percent of her trachea. She underwent an emergency tracheotomy, and we spent the next month by her side in the pediatric ICU.
There were eight other children in the ICU along with my daughter. We got to know all the other kids and their parents. I remember the little baby in the bed next to Rachel who was withdrawing from cocaine; nobody ever came to visit her. I remember the young girl with cancer and the other child with biliary atresia. All of these other poor parents were suffering with us. I remember someone from our insurance company coming to see why my daughter was spending so long in the ICU. She was fighting to survive while I had to fight with this pencil pusher from our HMO. It gave me a true understanding of what it feels like to be a patient. I spent my first Father's Day in that ICU wondering if my firstborn would live to see her first birthday. If she did survive would she be able to speak?
Rachel did survive, but the next two years were very hard. Her nursery room was more like her own ICU with apnea monitors, oxygen tanks, oximeters, blood pressure cuffs, tracheostomy kits, suction machines, nasal cannuli, and humidifiers. Each time there was a hurricane, we would have to spend several days in the hospital as Rachel's medical equipment required a constant electric supply. She required constant monitoring, and for two years we always made sure that one of us was with her at all times. We were told that many of these tumors shrink on their own, and I spent the next two years praying that she would make it to the next day. I kept telling myself that each day we kept her alive her tumor was getting a little smaller. After two years, her tumor had diminished enough in size so that the doctors were able to remove her tracheostomy.
Rachel was the only one of the eight children who shared the ICU to survive. We witnessed a few of these children being removed from the ICU in body bags and watched the parents grieve.
Despite a difficult beginning, Rachel is now a bright and beautiful 17-year-old with absolutely no memory of her traumatic past. I will always remember my first Father's Day in that ICU with sadness, but I am very thankful that things turned out well in the end. Although this was the worst day of my life as both a father and a physician, it also turned out to be the best day of my life. Since that day, I have faced many seemingly insurmountable challenges, but when I put them into perspective, they always seem very small in comparison to my daughter's illness.
Gregg L. Friedman, MD, received a merit scholarship to the University of Miami and graduated valedictorian /summa cum laude. He received a full merit scholarship to medical school at the University of Miami School of Medicine and graduated in 1985. He did his internship in internal medicine at Cedars-Sinai / UCLA in Beverly Hills, Calif. He completed his psychiatry residency at the University of Florida in 1989.
This article originally appeared in the October 2012 issue of Physicians Practice.