The single most common complaint of parents who have had a baby suffer from infant pyloric stenosis (“PS”) is their doctor’s lack of respect and trust for them, usually over several days of consultations. Just visit any of the several forums for parents of PS children.
What a very sad reflection this is on intelligent, thoroughly and professionally-trained and knowledgeable people whose work is always with people, many of whom are in the most stressful circumstances. Most parents of PS babies remember the frightening days before diagnosis and surgery as the most traumatic they have ever experienced.
Recently one of these parents published her story and a reflection on it on a U.S. Wall Street Journal website. It is well worthwhile passing this post on to the many readers of this blog.
Your doctor must trust and respect you
When my son, Henry, was just three weeks old, he suddenly couldn’t hold down his food. We took him to the pediatrician twice over the next few days, and both times the doctor told us to stop worrying and dismissed us as paranoid new parents.
But the spitting up wouldn’t stop, and in our hearts we felt something was seriously wrong. When the pediatrician refused to schedule a third appointment that week, my husband insisted we bring the baby in anyway. As a big “favour” to us, the pediatrician agreed to one more examination.
She felt a tell-tale bump on the baby’s belly, a classic sign of a disorder called “pyloric stenosis,” which weirdly afflicts mostly firstborn males (like Henry). It is a blockage between the stomach and intestines, fairly easily corrected with surgery, but life-threatening when left undiagnosed.
Luckily, we caught it in time and the baby was rushed to surgery. Today, Henry is a healthy 15-year-old, over 6 feet tall.
I told this story to one of the wisest people I know, Claire Fagin, Ph.D., a leading nurse researcher and health-policy expert who was once dean of nursing and later interim president of the University of Pennsylvania. I asked Claire what I did wrong in choosing this doctor with such “great” recommendations. Claire gave me the best advice I’ve ever heard about picking a pediatrician, and it applies to picking primary-care providers in general: It’s not enough to pick someone you trust. Pick someone who trusts you.
Ultimately, the most important problem with our son’s pediatrician was not that she made an initial misdiagnosis — she’s human, and people make mistakes. The problem was that she refused to trust us as parents, and flawed though we may be, we are our son’s most important lifeline. So any time you pick a pediatrician or your own primary-care provider, find someone who trusts and respects you. Have confidence. No medical or nursing degree can substitute for what you know about your own life or that of your child.
The other take-home lesson from Claire’s example as a nurse: Don’t limit your choices to physicians. Nurses are also wonderful clinicians. Studies have shown that nurse practitioners provide primary care that is every bit as high quality as care provided by primary-care physicians, so don’t rule them out in your search.
Leah Binder is president and chief executive officer of Leapfrog Group, a national organization based in Washington, D.C., in the U.S.A., representing employer purchasers of health care and calling for improvements in the safety and quality of the nation’s hospitals.