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.
It really is unfortunate that some nurses and doctors feel that they have to make predictions about a child born with disabilities or differences. When I was born no one knew what condition I had, or what to expect down the road for me. Many doctors and nurses tried to educate my parents on things I would go through and provide support without diminishing my parent's hopes and dreams for me. One nurse though did feel the need to try to "forsee the future" and told my parents not to have any hope for me. This stuck with my mom for years, and she frequently told me this story, which only made me try harder to disprove this nurse. When I started college I decided to email this nurse and let her know just how wrong she was about her prediction. I was not rude or mean, but I wanted to make sure she realized just how unnecessary and inappropriate her comment was. Here was a family who just gave birth to a child that was going to have a very difficult time ahead of her and instead of being supportive and advocating for me as the patient, she said one thing you never say to anyone. Thankfully my parents didn't listen to this nurse because if they had I don't think I would have done half of what I have accomplished. Nor would I have the hope and goals that I have for myself. Partially because of what the nurse said so many years ago, and partially because of what I have been through, I have decided to become a nurse. I plan to work with kids, and really want to incorporate mission work into my career because there are so many children all around the world who cannot get the medical care we can here in the US. Because my parents ignored that nurse I have been able to thrive after 21 surgeries (with 2 more on the way), graduate college, start nursing school, go on 2 mission trips (1 with Operation Smile), and educate many children and families in my community about the importance of accepting everyone regardless of how they look. As a nurse I plan to advocate and support my clients and families, unlike this nurse did many years ago.
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