Our journey with sleep apnea began in the NICU just after Halle was born. At first I thought I was being neurotic–I had just been through another traumatic premature labor and delivery and now my darling girl was in NICU–but realize now that it was just my momma instincts kicking into high gear.
I noticed that she was a “busy” and “loud” sleeper and had a lot of twitching/jerking and snoring while asleep. I asked for a neurologist to come see us so we could talk through it, and so she could see what I was seeing. After a few visits and an overnight EEG on our last night in NICU, the neuro diagnosed Halle with Benign Neonatal Myoclonus of Sleep. Basically, it’s a condition that causes those twitches during sleep and rarely requires intervention or treatment. Great news!
Still, her snoring continued. A forever Googler, I looked it up and learned that typically babies don’t snore so this is out of the ordinary. I mentioned it to her pediatrician who agreed she should be seen by an ENT specialist. Our ENT ordered a sleep study and shortly after Halle was diagnosed with Severe Obstructive Sleep Apnea (SOSA for short). Halle experiences hypopneas, or ‘shallow breathing’, an average of 49 times an hour and had oxygen desats in the low 80s with one going as low at 79. We happened to be at the ENT’s office when the results hit her chart, and we immediately scheduled a sleep endoscopy to see what was causing her SOSA.
Seeing Halle being carried away to surgery is one of the most difficult things I have done as a mother. Watching her come out of anesthesia is a close runner up. Our ENT came out during surgery and explained that she has tracheomalacia, laryngomalacia, and too much lingual tonsil tissue. He threw in that in his career he’s never had to perform a lingual tonsillectomy on a baby this young (she was three months old at the time). He also performed a supraglottoplasty on her larynx and placed tubes in her ears (Halle had hearing loss in her left ear so it was beneficial to perform multiple procedures while under anesthesia). And then our girl was back with us. We had some oxygen issues while in recovery, so Halle had a nasal cannula overnight and once she was back on room air, they worked to discharge us.
Our next step was a follow-up sleep study, which found her SOSA was greatly improved (average of 13 hypopneas per hour), but still present. In addition, Halle was choking on her formula during bottle feeds and the ENT suggested it’s a good idea to go back in to see more of her throat. And so surgery was scheduled again and performed at seven months. This time, another supraglottoplasty and lingual tonsillectomy were performed again, and he was able to see a malformation in her epiglottis, called a bifid epiglottis, which he also corrected. Recovery this round was a little harder for Halle, and we struggled with pain management. We spent two nights in PICU until they were comfortable discharging us with her pain under control.
And our third sleep study, if you can believe it, was worse. An average of 28 hypopneas per hour. We felt so discouraged. ENT did not feel comfortable putting Halle under anesthesia again so our next best option is CPAP (continuous positive airway pressure), and hopefully she will grow out of SOSA as her anatomy changes. Halle has such a complex and tiny airway that we must do something to help her get better rest.
We had a fourth sleep study, a CPAP titration study, to calibrate her pressures. From there, I struggled to figure out how to get our machine, find a DME that has proper staff to allow CPAP to a baby Halle’s age, and then wait for the machine due to a national shortage. In late January, we were finally able to get Halle setup with her machine. It was an exhausting start, as we did not get the proper support from the DME and felt like we were figuring this out on our own. Halle tolerated it fairly well, though the data was only showing she was wearing it a fraction of the actual time through the night. Her sleep neuro suggested that CPAP may not be the right treatment for her because she sleeps with her mouth open, and today we are waiting for a BiPAP titration study in May as our next step. BiPAP is essentially a ventilator for sleep–instead of a consistent, continuous pressure to keep the airway open, it delivers higher pressure when you breathe in versus when you breathe out to help facilitate proper breathing.
The hardest part of all this is recognizing that Halle has never had a good and restful night’s sleep. She is delayed in her motor skills, which is common in children with Down syndrome, but is likely adding to her delays. She works so hard in all of her therapies, and is so incredibly determined. I can see her strength and perseverance even though she must be so tired all the time!
This is only the beginning of our sleep apnea journey and we have a long road ahead, but I’ll continue to learn all I can so she gets the care she needs! I just want my sweet girl to sleep well. 💜
