Breathing. We all take it for granted. It’s such a simple thing, no one thinks about it. We just do it. At least we should.
For Cayden it was a bit of a challenge. They were concerned that he would not be able to breathe at birth. We had a NICU team standing by. We had to make choices and birth plan stating we wanted intervention or not & if so, how much. We decided we wanted normal intervention, but not extraordinary life-saving measures. Meaning if he was too sick to live, we did not want to extend his life with machines and devices, but if he was struggling like any normal infant might struggle at birth, we wanted him to have typical support. These are the kind of things we had to decide before we even met Cayden!
So at birth, which was a long, slow ordeal of induction and monitoring over 24 hours, we waited. A team of doctors, students, nurses were at the ready. My privacy was a long-forgotten thought. Everyone wanted to have a chance to see this ‘once in a lifetime’ baby. And yes, that is how rare these kids with HPE are. Most doctors, nurses & students only read about holoprosencephaly, that is why it is so hard to get a clear prognosis.
Anyway, I digress.
At Cayden’s birth, he was quickly whisked away to the warming table to be assessed. He did need a little O2 mask to help him get started breathing, but nothing more was needed. Praise God! Little did we know then, that his need for a ‘little O2 mask” was going to be a habit for Cayden.
Soon after birth, we realized that Cayden had a bit of a hard time breathing. It wasn’t labored, it wasn’t gasping, it was just noisy. Stridor, they called it. Caused by laryngomalacia, or floppy windpipe. Often found in children with low tone, this usually was something they grew out of by 2-3 years old. Until then, we needed to monitor his position, carseats were a particular worry for a while, as his windpipe was somewhat compressed.
He was tested for Sleep apnea because of the breathing, and man, was that a hard night. How they expect any 2 year old to sleep normally away from home, with a dozen probes on their head, and more on their chest, arms & legs, I don’t know. No matter he didn’t sleep well. I didn’t doubt that he had apnea (which was over 70 episodes in 4 hours or so) and positional and central apnea was diagnosed. We tried a variety of monitors, toe monitors, finger, and all seemed like they were beeping just because he would move and they would shift & cause an alarm. It was a nightmare, that thing constantly going off. So after about a month of really poor sleep for all of us, we decided to take the monitors off. Looking back, perhaps we should have looked into finding a different type of monitor, but that was really given as our only option that I recall.
After he did not grow out of the stridor, they thought he might also have Subglottic Stenosis, or a malformation in the airway & vocal folds. So in for a endoscopy to take pictures of his vocal cords, and nasal cavities. No malformations, just floppy airway was the conclusion. They did think that he had overly large tonsils for the size of his airway, so a tonsillectomy was ordered. That was a scary surgery too. A strong need for oxygen after to wake up, along with a bad reaction to morphine (slowed his struggling breathing down way too much) and he ended up in the PICU for several days. A nasal trumpet was placed, which of course he hated, a super sore and scratchy throat, and a ng tube for eating, which he tried to pull out every time he could, made for a miserable few days stay. Luckily, we had some excellent nurses on that visit (in Chapel Hill), and he turned the corner. Mental note, no more morphine.
The tonsillectomy did not help the breathing at all. Nothing changed. Still snoring, day and night. It became white noise to me, I didn’t hear it anymore, but it was a bit of an issue for his audiologists, who worried that he couldn’t hear well over the sound of his own breathing. So we worked on positioning, and found a slightly reclined position worked best for diminishing the noise, opening up his airway and quieting his breathing.
More than once a tracheotomy was suggested to us, but again and again we refused. Cayden had not had any episodes of turning blue, no problems with coughing or struggling to breathe. Yes, the sleep apnea was an issue, but the trach seemed like a bigger issue to us. A major life-changer. Maybe we were playing Russian roulette with his breathing, but we were confident in our choices at the time. He wasn’t suffering, he was doing okay, he just was a noisy child.
So when he died suddenly in his sleep that night of Feb. 1, 2008, we were shocked and traumatized. Looking back, we believe he may have been having apnea episodes at night that last week that we were unaware of. There were some nights, that our dogs got all upset at night, and I didn’t understand what their issue was. I realized the morning Cayden died, that they had been trying to tell me that he was having problems, but in my middle of the night sleeping brain, it just didn’t process.
Would we do it differently now? Would we have done an apnea machine, a monitor or a trach? We don’t think so. The apnea monitor was so uncomfortable for Cayden, he would constantly pull it off. It was not really a valid option after a night or two of struggling. He hated it. The monitors were not awful, but the constant beeping and state of fear when they went off was not a way to live life. The trach was a step we were really not wanting to take, and really didn’t seem necessary.
As we see it, Cayden was called home.
Romans 10:13 tells us that “Everyone who calls on the name of the Lord will be saved.” In my heart of hearts, I believe that Cayden cried out, in his frustration, sick of his tired, deaf, mute, lame little body, he cried out to Jesus and and our Savior said, “Yes, child, come with me.” And gladly Cayden went. I don’t see it as tragic anymore, traumatic, yes, but tragic no. Cayden is healed, he is joyful, he is breathing heavenly air, without a sound.