Obstructive sleep apnea (OSA), a potentially serious disorder in which breathing repeatedly starts and stops during sleep, is one of the most common medical reasons that babies and children may have trouble sleeping. Surprisingly though, it’s not uncommon for children’s OSA cases to go undiagnosed or take a while to diagnose—even extreme ones. If your child or baby is having problems with sleep, it’s very important that you rule out OSA (as well as any other medical causes) before you begin sleep coaching.
Rachel, first-time mom to 13-month-old Ethan, shares her year-long journey to diagnosis to help other parents learn from her experience and better know what to look for in their children.
Looking back, were there any symptoms in Ethan’s earliest days?
Yes, he used to arch his neck and point his chin upwards. He also snored loudly during sleep and would make snorting sounds when he tried to sleep. Additionally, Ethan would wake on average every two hours or shorter with a complaining cry. At the time, I didn’t know that these were among the most common signs of sleep apnea.
Did you voice your concerns to your pediatrician?
We started to ask about Ethan’s breathing at his three-month appointment–particularly because around this time he began attending daycare and getting colds. He always sounded so snorty and would cough a lot when he slept. The doctor’s office told us that it was common congestion and that he’d grow out of it. They told us to use a humidifier to keep the room moist and to try a wedge pillow to open up Ethan’s nasal passages.
By Ethan’s six-month appointment, not much had changed. The pediatrician told us to lower the temperature in his room, to begin running the humidifier 30 minutes before bed, to give him longer warm baths and to rub Vicks on his chest, feet and the back of his neck.
It was around that same time that my husband and I took him to the hospital because he was gasping for air one night when we laid him down. The hospital gave us some Tylenol and sent us home.
What were some other indicators that things weren’t right with Ethan’s health?
For one, he wasn’t meeting his developmental milestones and, when we started him on solids, he was having a really hard time eating. He would gag, choke and/or vomit on things like mashed bananas and watered down oatmeal.
Ethan was also battling a perpetual cold. From the time he was three months old, he was getting a cold at least once per month. He’d have a runny nose and cough.
At what point, did you decide to seek a specialist?
One night, when Ethan was 11 months old, he was waking every 30-60 minutes—with yet another cold–crying and coughing. The next day, we called his doctor’s office and insisted they conduct a more thorough exam because we were confident he was not breathing properly. After the examination and then additional x-rays the pediatrician confirmed Ethan had a serious problem, with enlarged tonsils and adenoids. That’s when we called the Children’s Hospital of Philadelphia to make an appointment with an ear, nose and throat specialist (ENT).
Before the appointment, the office asked us to take a video of Ethan’s sleep patterns. During the visit, the ENT took a quick look at a few of the videos and then immediately examined Ethan’s throat and x-rays very closely. He told us that his tonsils were way too big for his age and explained that Ethan would need to participate in a sleep study to confirm the diagnosis and plan next steps. We finally felt validated.
What was the sleep study like?
The sleep study captured about eight hours of data on Ethan’s condition and determined just how severe his case was. For example, a bad case of sleep apnea is exhibiting over 10 occurrences in one hour. Ethan showed up to 52! Also, he was only getting about 70% percent of oxygen, while good, average levels are above 90%.
What happened next?
His case was so severe that the hospital called to schedule surgery almost immediately following the study. Ethan had surgery to remove his tonsils and adenoids in March.
How’s Ethan now?
After a little recovery and adjustment period, he is almost sleeping through the whole night and is rapidly catching up with his physical development. And he eats everything now!
What advice would you offer to parents who are in a similar situation?
If what the doctors are recommending isn’t improving your child’s situation, become more persistent in finding a solution. If nothing’s working, ask to see a specialist. And take videos. That really helped us.