I will never accept the misplaced admiration of our perceived strength through Hope’s open heart surgery. Surviving our child’s life-saving procedure wasn’t some great feat of strength, it just happened. Within three months of meeting Hope, her heart was fixed and there’s been very little looking back.
Other than her diagnosis of complete atrioventricular canal defect, 105°F fever prior to surgery, and some resulting mitral valve leakage, Hope’s health has been excellent. She has had one diagnosed ear infection in her 3.5 years; she had a false positive blood test result for celiac disease, which was quickly straightened out; her annual blood screenings for thyroid disorder and anemia always come back normal; and she passed her first sleep test in August 2017.
But this past spring, things took a slight turn. Back in March, Hope’s hearing test went so poorly that we had to put a stop to the disturbing complacency of partially failed, incomplete tests. Hope began showing type B tympanograms—no movement of the ear drum—by the time she was one year old. That was two years ago, or three or four hearing tests ago.
We happened to have our annual appointment up in Boston to see Dr. Brian Skotko at the MGH Down Syndrome Program later that same month, where he noticed Hope’s tonsils were slightly enlarged. After discussing her hearing tests and sleep habits, he noted an ENT visit was a good idea and also suggested that Hope have a repeat sleep test ahead of the 4-year-old mark to rule out obstructive sleep apnea.
Following a trip to the pulmonologist, the ENT, our new audiologists, and the sleep center, it was all determined that Hope has mild hearing loss in one ear and moderate hearing loss in the other, plus mild obstructive sleep apnea. That’s some pretty devastating news to discover when you realize the holes left in your baby daughter’s medical care have allowed her health to deteriorate for months and even years. The only redeeming fact of all of this news is that both issues should be correctable and God willing without any lasting damage, but the irreplaceable time stolen from Hope is going to take some effort to forgive.
So in a few days, we send Hope for ear tubes and an adenotonsillectomy. The tubes will create a pathway to drain out the ear fluid that gets stuck in her middle ear; the adenoid removal will also help aid middle ear fluid drainage plus remove potential airway obstruction; and removal of her tonsils will be a permanent solution for bacterial retention and airway obstruction. But unlike her heart surgery, this is technically elective. We could accept her hearing loss as inevitable and just continue on with speech therapy and sign language. We could even rationalize that her sleep apnea is only mild and do watchful waiting to see if it gets worse over time. I’m sure a lot of people take that route.
But we can’t do that. As unfair as surgery, an overnight in the hospital, a nasty 3-or-so-week recovery, and countless follow-up appointments sound, continued hearing loss and dipping blood oxygen saturation throughout a long night’s sleep sounds even worse.