Sarah + Halle: Sleep Update

Written by: Sarah Raphael

Sleep. Probably one of the most significant pieces to the ‘health’ puzzle. It’s been a big buzzword in our house since our daughter was born, especially coupled with the word ‘apnea’.

Halle is three now, but sleep has always been a frustrating part of her life. Not in the way you might think. She sleeps through the night, but it’s not quality sleep and never has been; not since the day she was born. Let me take you through our journey until now–waiting for her fourth airway surgery next month. There’s a lot, but I’ll try to be succinct.

When Halle was born, she spent over a week in NICU for various reasons: oxygen support, jaundice, low glucose readings, and a neonatal echocardiogram. While there, I noticed that when she slept she twitched a lot. I took videos and spoke with the nurses and physicians overseeing her care. They brought in a pediatric neurologist who ordered a 24-hr EEG to monitor her brain activity. The neurologist diagnosed her with Benign Neonatal Sleep Myoclonus, which is essentially jerking in the extremities during sleep that mimics seizures. It goes away with time, though it can mean there is a higher risk for a seizure disorder to develop over time.

A few weeks later at Halle’s two-month pediatrician appointment, I raised the concern that she snores in her sleep. I read online that it’s not normal for newborns/babies to snore, so I wanted to see if this was anything we should worry about. We were referred to an ENT, who then ordered a sleep study. The sleep study revealed that Halle had severe obstructive sleep apnea, with an average of 48 events per hour. For those of you who aren’t familiar, this is very high. Anything over ten events per hour is considered severe. It’s pretty terrifying to look at your tiny baby and realize how many times a night they completely stop breathing. We were immediately encouraged to have a sleep endoscopy done to see in her airway and make any adjustments as needed.

For anyone who is not familiar with sleep apnea, it impacts many different functional systems in the body, including cardiovascular, endocrine, digestive, etc., and can impact development in infants and small children. In adults, it can cause many health issues like migraine, high blood pressure, fatigue, and a higher risk of stroke and cardiac events. Sleep apnea is not something to ignore.

Halle’s first surgery was in March of 2021, at just three months old. I was a mess when they took her back. I knew it would be a quick procedure but I think anytime you give your child to a medical team to be put under anesthesia is difficult on a parent’s emotions. During the endoscopy, she was diagnosed with laryngomalacia and tracheomalacia and had two procedures done to open up her airway: a supraglottoplasty (trimming of the larynx) and lingual tonsillectomy (trimming back excess tissue on the back of her tongue, which the ENT said he “had never seen that large on a baby her age in his career of 30+ years” – way to go Halle!). It’s worth noting that she also had tubes placed in her ears during this surgery due to failing her newborn hearing test with complete hearing loss in her left ear. Thankfully, this reversed the hearing loss and she has had no issues in that department since!

Recovery was a little rough on her, and she needed oxygen support the first night. We spent two nights in the pediatric unit until she was on room air and her pain was managed. Then we took her home.

Now, with each procedure, there is a follow-up sleep study to see how the sleep apnea was impacted. Halle’s second study showed a big improvement in her average events per hour (reduced to 28) but still not enough for a baby so young and small. And so, we went back to surgery in July 2021.

During this surgery, the ENT took down more of her lingual tonsil (her second lingual tonsillectomy) and also noticed something he hadn’t had the opportunity to see previously: Halle had a bifid epiglottis. He performed an epiglottopexy which is a laser-surgical procedure often associated with bifid epiglottis and laryngomalacia. Fingers crossed that these two procedures would do the trick.

Another recovery, another follow-up sleep study. This time, her apneas reduced to 13 per hour average, and we began to see the light at the end of the tunnel! This score is still considered severe, however at this point, ENT and sleep pulmonary physicians decided it best to move to other treatment options. The thought (and hope) was that as she grew, her airway would grow and eventually reduce the apneas, and during that time we could use medicinal and sleep devices to help her get better sleep.

Halle was freshly one year old when we began C-PAP. It lasted one month. We had a horrible experience with our DME (a story for another time), we were not properly trained to use the device in a crib setting and she simply did not tolerate it once we got everything set up correctly, anyway. We worked so hard at it but then she had some isolated events that raised concerns of seizures so we put C-PAP on the back burner and focused on that. Thankfully, testing revealed no seizure disorders.

That summer, however, she began coughing a lot while drinking her liquids which raised some concerns for aspiration and the ENT also noted enlarged tonsils and adenoids visually, so he suggested we go back in assuming he would remove those and anything else that might need to be done.

Back to surgery in June 2022. Just the T&A removal is all she needed. Another two nights in the hospital to get her pain under control. This was by far and wide, the worst recovery we have ever had. Pain management was impossibly difficult for a child who doesn’t take oral medication well. We had to force it, and it was heartbreaking and all-consuming. For a full two weeks. Pro tip: Before this surgery, stock up on Feverall suppositories. It will save your sanity. I wish I had known this before day seven! But, we survived, like we always do!

That was the surgery that really did the trick for her! I think it was her age, size, and anatomy that all fell into place, but her sleep study revealed average apneas of 5.6. I was so thrilled.

Halle had a routine ear tube surgery in June of 2023, which was surgery #4 for her, and in April 2024 she will have another sleep endoscopy for surgery #5. Her average apneas have been getting slowly worse (her latest annual study inching close to 10), and she is no longer a candidate for C-PAP (not that I want to go down that road again) because she moves around her crib so much. Her ENT feels there is more he can do on her epiglottis, and likely will need to take her lingual tonsil down again. It’s been almost two years since he has seen her airway via endoscopy so it’ll be interesting to know what’s changed.

This mama is tired. But I am ready. I’ll always be ready. Ready to advocate. Ready to soothe. Ready to sing and play to her as she recovers in the hospital. Ready to talk to all the doctors. Ready to write down all the medical terms. Ready to research all the new things I learn. Ready to get her the help she needs to get a good night’s sleep for the first time in her life.