Over the past year, it was extremely scary to watch Holden sleep at night due to his worsening obstructive sleep apnea (OSA). My three year-old son was snoring like a warthog and his apneic episodes were occurring at increasingly frequent intervals.
During each apneic event, Holden would stop breathing for a few seconds, then catch his breath with a sharp inhalation. After that, he would let out a scared/frustrated cry and kick around until he settled himself back down - to just do it all over again.
Not only was it visually frightening to watch Holden sleep, OSA can cause internal organ damage and delayed brain development if left untreated. Holden was supposed to be wearing a CPAP to control his OSA, but adamantly refused to despite everything we tried.
One possible way to improve OSA in children is a Tonsillectomy and Adenoidectomy (T&A). To Sam’s and my frustration, Holden’s specialists had conflicting opinions about the effectiveness of a T&A in children with craniosynostosis syndromes.
In a typical child, enlarged tonsils and adenoids can restrict the upper airways, causing OSA. In children with craniosynostosis syndromes, OSA is more commonly the result of anatomically restricted upper airways. Slow bone growth of the midface often causes these children to have small nasal passages and oral airways. This makes breathing while lying down particularly challenging.
There was no way to know if removing Holden’s tonsils and adenoids would improve his sleep apnea or if his apnea was predominantly caused by his bone structure. After much research and deliberation, Sam and I decided to have Holden undergo the surgery.
On June 22, Holden, Sam and I were up early and headed to check in at Dell Children’s here in Austin. My usual anxiety about putting my son through surgery was magnified by the alarming rise in COVID-19 cases throughout the city.
When we arrived, Holden was in a delightful mood, which alleviated some of my stress. He was having so much fun during the pre-op proceedings, you would have thought he was on a play date. When the nurses came to get him, he skipped alongside them back to the operating room, singing a silly song, one hand holding a nurse’s and the other swinging around his beloved “Heart Puppy.”
While Holden was sedated, we had also decided he would have an Auditory Brainstem Response (ABR) test to measure the extent of his hearing loss. In kids with craniosynostosis syndromes, the slow bone growth of the midface can cause them to have narrow ear passageways. Thus, many children have some degree of hearing loss.
While Holden was in recovery, Sam and I met with the audiologist who performed his ABR. We were overjoyed to learn that Holden’s hearing loss is minimal and he doesn’t need a hearing aid at this point in his development.
After that we headed to the recovery room to be with Holden when he woke up. When we sat down beside our sedated boy, the nurse told us that children are often in a lot of pain and extremely angry when they wake up from a T&A. In my mind, I was thinking, “Nah-not Holden. He’s had two skull surgeries. This will be a walk in the park for him.”
Then he woke up and all hell broke loose.
Holden went from sleeping peacefully under anesthesia one second to sitting up screaming, in a full out physical rage the next. He was a red-faced, livid mess for the next 45 minutes. He finally calmed down after the anesthesiologist gave him fentanyl.
Holden was able to come home the following morning. For the next two weeks, Sam and I felt like we had a newborn again. Holden’s pain was so bad at night that he woke up screaming every three hours. During these spells, he would be so confused that he physically refused to take his pain medicine. It sometimes took an hour to get him medicated and back to sleep.
Holden was in pure misery. I kept thinking, “Have I put my son through all of this for it to have no effect on his apnea?” It seems unbelievable, but Holden’s recoveries from skull surgery were cakewalks in comparison.
Finally, one morning Sam and I woke up rested and we realized Holden had slept through the night. And he has continued to do so ever since. His sleep has been quiet and peaceful sleep, with no snoring or visible apneic episodes. Holden is so quiet during the night that Sam and I sometimes give him a little shake just to make sure he is still alive.
We won’t know for sure how much the surgery has helped Holden’s OSA until he has a sleep study in September. It is possible he will still need his CPAP or other intervention. There is also the possibility that Holden’s apnea could worsen again as Holden continues to grow and his midface does so at a slower rate.
What I do know is that today, my child is sleeping peacefully for the first time in years. Today I know that he can hear my voice without a hearing aid. Today he is growing and thriving. Today I am choosing to be optimistic that putting Holden through the surgery was the right decision.