Twelve years ago at my 20-week ultrasound, I was informed that my baby had at least two serious birth defects. The maternal-fetal specialist that delivered the news had no bedside manner and completely lacked compassion. His recommendation was that I terminate my pregnancy. I walked out of his office that day and never saw him again.
Eleven years ago, when Peter was only six months old, a developmental pediatrician informed me with absolute certainty that Peter would never eat, chew, or swallow. She was 100% certain that she was right. I never saw that pediatric specialist again.
A few months ago, I encountered yet another specialist with a crystal ball. This Harvard-educated doctor had never met Peter until the day of his appointment but was apparently able to assess everything necessary to predict his entire future. I will not be seeing her again.
Peter is followed by 8-10 pediatric specialists on a regular basis and has had appointments and evaluations with countless others. The specialists that regularly care for Peter are the ones who never take away hope and never speak in absolutes. They are the doctors and surgeons that treat me as an equal part of Peter's medical team, take the time to listen to my concerns, admit there are no certainties, and enjoy watching Peter grow and develop. Peter's team of specialists take pride in his accomplishments, value our family, and use their knowledge and expertise to open doors rather than close them. The specialists that haven't lived up to these expectations are not part of Peter's medical team.
Sadly, fewer doctors are choosing to go into pediatric specialties. This is creating longer wait times to secure an appointment and fewer choices for parents of kids with complex medical needs. What if I had not been able to secure second, and in some cases third, opinions in the above scenarios? Would Peter have even been born? Would I have invested the time in therapy that enabled him to learn to eat? While access to care is paramount to Peter's survival, the ability to choose who provides his care is equally important. No matter what the future of healthcare provides, I hope that parents of medically-challenged children retain this right to choose.