Building Health Care Allies for a Boy with Physical Challenges

How can we enlist doctors, nurses, and other medical personnel to set up medical procedures so that they go well for young people? This is what I set out to discover several years ago when my son contracted a life-threatening illness and then survived a heart transplant.

After much discharge, many failures, and some small successes, I finally made it happen this winter. My twelve-year-old son, C-, went into the hospital to have some gum surgery, and I was able to listen to him cry and rage and shake for an hour in the operating room, with two doctors right behind me patiently following my lead. Then, with their attention and mine exhausted, and with my son's insistence that he wasn't ready for it yet, we decided not to do the procedure that day.

Two months later we rescheduled the surgery. My son had sessions for several days beforehand and was able to complete the procedure successfully. The doctors and nurses were quite patient with his discharge throughout the surgery (he was awake for it) and let him be in charge of the speed at which things proceeded.

What was it that made the difference?

  • I built relationships first. This was the fourth or fifth time we had seen these doctors. We kept appointments unless there were emergencies, and I treated the doctors well. They both had a chance to experience my son as the cooperative, delightful boy that he is.


  • I gave them information about C-, that it helps if he can make noise and if he can direct the pace of things.


  • I was completely relaxed and confident about the whole thing and stayed delighted with my son no matter what he was saying or doing. At the same time I kept letting him know that we were going to do the procedure and that it would hurt.


  • After we interrupted the procedure, I wrote a letter to both doctors thanking them for their patience and good care and giving them some information about Cñ and why this event brought up so much fear for him (see letter following this article "My Letter to the Doctors").


  • On the rescheduled date, I again was relaxed and delighted with the doctors and with C- and gently insisted on staying right next to him, although they had asked me to leave so the nurse could sit in my place to assist with the procedure. I gave her the chair but continued to stay close and let Cñ hold my hand. Finally, when they saw that I wasn't going to move, they handed me a mask and head cover and let me stay. We continued like this, and I saw my first surgery!

C- was in excellent shape at the end and had a lively conversation with the doctor about skiing. It was a great success. I will never again cave in to "the way it's done here" when I know there is a way that will work better for everyone.


Last modified: 2022-12-25 10:17:04+00