To Sedate or Not to Sedate

Seemingly easy decisions for most parents often prove difficult with a child who has a different chromosomal karotype—like Zane. At the moment, we are trying to coordinate appointments at The Children’s Hospital in Denver. Since the drive takes a day with kids, we work to fit in as many clinics as possible in a short time.

One of the appointments I am supposed to arrange is an ABR (auditory brainstem response) to test Zane’s hearing. He already has failed three hearing screenings. The next step to indicating where his hearing loss lies is with this ABR. However, the test requires that Zane be sedated. There are risks to anyone under sedation; more so to Zane. The last time Zane was anesthetized (in 2007) he coded twice, his oxygen saturation level dropped as low as 26, and he spent quite a few days in the PICU on a ventilator. This may have been the result of anesthesia; it may have been caused by the administration of morphine on the part of the nursing staff after being advised by me not to give him the drug. Whatever the cause, our son almost died.

While I understand the importance of hearing, I don’t know if it is worth risking Zane’s life. Sure, things may turn out just fine during and after sedation with an ABR. They also may not. The extra 18th chromosome that is present in presumably every cell of his body is unpredictable. His response to sedation may be different than most of ours given this extra genetic material.

We know Zane can hear. He responds to voices, music, and noises. What we don’t know is what pitches, what tones, he cannot perceive through his sense of hearing. But he is a happy child. He doesn’t seem frustrated by whatever absence of hearing he has. His pediatrician really wants him to have the test. I don’t. My instinct tells me it is the wrong thing to do. I’d rather continue to have my happy son who may or may not have significant hearing loss than risk putting him in harm’s way needlessly.