Some Thoughts from the Parent of a Medically Complex Child

Today I would like to write to you not as a professional health care blogger, as I usually do, but as a parent of a medically complex child who has had many, many encounters with physicians and health care providers.

My son was diagnosed in utero with a multicystic kidney –enough to make any (especially first-time) parent stressed, fearful and on-edge. But, that was nothing, compared to when the other shoe dropped, 36 hours after he was born. It was then that he was diagnosed with tracheal esophageal fistula. In his 8 short years so far, he has endured 6 surgeries on his esophagus, countless trips to the ER, multiple cases of pneumonia and too many x-rays and barium swallow studies to count. And, let’s not forget the week-long stay in the PICU that has now lead to his daily use of the Vest therapy to try and prevent his pneumonias.

Over these past 8 years, we have received outstanding care at our local children’s hospital. I have encountered staff that have literally saved the life of my child and staff that are so caring that I feel forever indebted to this hospital.

But, today I would like to talk about a few small, poor encounters we have had, to focus on a couple of very subtle risk management issues and what can be done to avoid these potentially explosive situations. After all, it’s not just major errors that result in lawsuits, it can often be a series of smaller unsatisfactory encounters that a patient has with a physician, that add-up over time, and reach a tipping point.

1. Several times I have been asked, “Would you like me to wake you with the results?” Seems innocent enough, right? This question has been asked of me often during many nights spent in the hospital, including: 1) when a resident first suspected Owen had TEF and 2) when he was admitted to another hospital through the ER after spiraling downward so fast and they were trying to figure out what was going on.

While this seems like a considerate and thoughtful question, and I am sure every physician’s intentions are good when he or she asks this, to a parent whose life is crashing in on them, this can be perceived as a really dumb question, at best, or rude question, at worst. Why? To a tense parent, it may be perceived as, “I’m not sure if you care about your child. You seem like the kind of parent who might put his or her sleep needs over the needs of your child.” Please assume that I care more about my child than some shut-eye. Instead, please say, “We will give you the results as soon as we have them.”

2. Please know that apologies aren’t just for errors and “big” things. The surgeon who initially did our son’s TEF repair and second surgery, who we loved, left the hospital, so we were assigned a new surgeon. This new physician performed a series of three surgeries in three months on our son. Again, this was a very tense time. We were beginning to think, “Is this how it’s going to be for the rest of his life?!” Add to that the fact that she arrived later, and later, for each surgery –despite the fact that he was always the first patient on the surgery docket –and there were no emergencies that preceded him.

Late once, I can understand, twice I can tolerate, but late for three out of three surgeries? That’s a lot –especially without either an apology or an explanation. And, given the fact that it’s not only tense for any parent having his or her child go into surgery, but that we were trying to handle a toddler, who was gotten up extremely early, was not allowed to eat or drink anything, and then expected to sit contentedly on a hospital bed for 1 1/2 hours prior to surgery (and actually longer, given the lateness of our surgeon), this was a breaking point for us. I had no doubt that she was an excellent surgeon and technically excellent, but she treated us poorly –and it was a really bad time to treat us poorly. Thus, I asked to change surgeons. Had she offered an apology each time and/or passed along an update with a less senior physician like, “Please tell the family that I am running 45 minutes late,” I would have stayed with her.