Sunday, March 29, 2015

"Our Agonizing Decision to Decline a Referral", by Linda Claire


by Linda Claire

We were faced with the difficult choice between raising a child with a challenging medical condition or declining or long-awaited referral.

We expected stacks of paperwork. We anticipated the eager, stressful wait that would start the day we sent in our dossier and last until the day we held our child in our arms. But we weren’t ready for a complicated referral.

When we received a referral for an 11-month-old girl, just six weeks after we sent our paperwork, I told my husband, “The hard part is over. Why would we ever turn down a referral?” I spoke too soon.

Questions arose as soon as we began sifting through the file. Some of the medical information raised concerns, but test results that would address those concerns were due shortly. When they arrived, however, we learned that the child had undergone a simpler, less conclusive test, not the one that would provide the answers we sought.

We could decline the referral, or wait for the more extensive test to be completed. In theory, it was a no-brainer. This child had medical needs beyond those we felt we could handle. But it was not simple. This was no longer a theoretical child. Here was a name, a face, a person whose life would change as a result of our decision.

I agonized, my gut telling me different things at different times. I made lists, weighing pros and cons. I tried to calculate the likelihood of every possible outcome. I spoke to very patient doctors, asking the same questions over and over. I went to bed thinking we should wait, and woke up thinking we should decline.

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