Making the Tough Calls

When does the risk outweigh the benefit? How do you decide if medical treatments for your child are more harm than good?

Making the tough calls has never been easy, and apparently the weight of this burden never goes away.

I remember my son, 4 months old, critcially ill and crying incessantly. Crying because he was in pain. Crying while I, his mother, held him down so that the radiologist could insert a central line into his neck. But what choice did I have?

Nine surgeries later and the choices are still hard. It’s not just the major decisions that we wrestle with, but the day-to-day ones as well.

  • Should we try out the trial medication after his transplant in hopes of warding off another disease attack on his new kidney?
  • Should we push the specialist to put him on the kidney transplant list now, instead of waiting for him to gain a few more pounds?
  • Should we give the elective daily growth hormone injection, although he is terrified of shots and already has to endure injections that are non-optional for his survival?
  • Will the pressures of being of small stature as he enters adolescence and then adulthood outweigh the pain of injections now?

Everyday, as special needs parents, we are forced to make decisions small and big that will forever effect our child’s life and health. It’s a heavy burden to deal with. Prayer, support of friends and family and an extrememly resilient little man are what eases the burden for me, but it’s always there….like a backpack I lug around all day, everyday. Sometimes my load is a little lighter and I’m always grateful for that. I wonder. How do you guys handle these burdens?

How do you make the tough calls?

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