Doctors always know best? Well, that may be true in a medical sense. I did not go to medical school, I do not have a medical degree, and I do not work in the medical field. But I know my child. I live with her day in and day out. I have a great sense of how her body works and how her mind works.
My 10-year old daughter was born with a craniofacial syndrome that affects many aspects of her health. As a result, we see a number of specialists on a regular basis. I, and I alone, am the only one who has her entire medical history, every piece of her medical puzzle, in my hands. Because of this, I am her best advocate. And as my daughter continues on her lifelong medical journey, I become choosier about the doctors we see and trust. My goal as a parent is to surround her with doctors who are the most knowledgeable about their field, but who are also willing to listen to their patient and her advocates and step outside of the box on occasion. Her voice as the patient and my voice as her best advocate must be heard.
Medicine may be 98% science, but it isn’t 100%. Not everyone fits into a disease, an illness, an injury in the same way. What works for one person doesn’t always work for the next. My daughter has gone through some pretty dangerous situations due to doctors who aren’t willing to listen to me as her mom. Needless to say, those doctors are no longer part of our journey. They have been replaced by those who believe that a medical text book isn’t always the answer. They have been replaced by those who are willing to get to know her as a person and us as a family. They have been replaced by those who I can trust with her life. I’m a firm believer that one of the main lessons taught in medical school should be to listen to the patient, listen to their advocates, and listen to their family. In the end, those people know the child best.
My best advice to any parent, as their child’s best advocate, is to not be afraid to speak up, to ask pointed questions, to argue, to demand to speak to someone else, or to even “fire” your doctor. And if this is something you have trouble doing, find someone you trust to be your advocate liaison. It may just save your child’s life.
CPCE note: Amy Hendershott is the parent of a child with a craniofacial syndrome. We welcome you to read Amy’s blog, where she writes more about her medical journey with her daughter: http://anearforkgg.blogspot.com