Being a father is a joy that knows no bounds. When my wife, Shruti, and I decided to adopt our son Enoch, we knew that it would be a unique journey. Enoch was diagnosed with Treacher-Collins Syndrome, a rare genetic disorder that affects the development of bones and tissues in the face. One of the most common complications of this syndrome is difficulty breathing during sleep, which is why we had to do a sleep study for him.
We arrived at the Shishuka Children’s Specialty Hospital in Kalyan Nagar at 8:30 pm for Enoch’s sleep study. The room we were given had a patient’s bed and a small bed for the attendant. Hannah, our 4-year-old daughter, came along to keep us company. The sleep study gear included an SPO2 sensor on Enoch’s finger, a tube that went into both his nostrils, which was very uncomfortable for him, and a device strapped to his chest that would show green lights when all data was being captured properly and will blink in red light when the data is amiss.
Since we didn’t let Enoch sleep in the afternoon, he was very sleepy by the time we started the test. When I rocked him for a few minutes, he fell asleep quickly. We put the sleep study gear on him, and he slept from 9 pm to 10:15 pm. However, after he awoke, he refused to sleep and was very attracted to the lights on his SPO2 sensor and on the device on his chest. He continued to play for the next 3 to 4 hours, which made me so nervous.
I was so on edge and losing my temper because if we couldn’t do the sleep study that night, then we would have to spend again and come back for another night, which would be exhausting. Thankfully, Enoch finally slept at 1:30 am, and all went well until the next problem arose.
At about 3 am, the battery died, and the device wouldn’t work anymore. I woke up the nurses and asked for help. We tried calling the sleep technician, but he was fast asleep and didn’t pick up the call. Finally, we came up with an idea and used the AAA batteries from the remote control of the air conditioner to replace the ones in the sleep study device.
With this hack, we were able to conduct the test well, and by morning, 9 am when the doctor arrived, he confirmed that the results would be out in the next 3-4 days. Now, we are awaiting the results and hoping that the sleep study will give a “GO” for the cleft palate operation.
It’s amazing how a small device can give us so much information about our son’s health. The SPO2 sensor on his finger measures the amount of oxygen in his blood, while the device on his chest monitors his breathing and heart rate. The tube that went into both his nostrils is called a nasal cannula and is used to measure the flow of air in and out of his lungs. All of this data is crucial in determining if Enoch is at risk of complications during his surgery.
Throughout the sleep study, Shruti and Hannah were instrumental in keeping everything in order. Shruti was a great support system, and Hannah kept us entertained with her silly jokes and adorable antics. It’s amazing how much love and joy they bring to our lives.
Our experience doing the sleep study for Enoch was both nerve-wracking and eye-opening. We learned a lot about our son’s health and how a simple device can provide us with crucial information. As we await the results of the sleep study, we’re hopeful that everything will be fine and that Enoch will be able to undergo the cleft palate operation