Christmas Crisis
In an instant, my world turned upside down. For all I knew, my son – our only child – was dying in my arms. It was Christmas Day, 2018. Only minutes earlier we’d eaten breakfast after opening our gifts, but now my son was non-responsive, convulsing, gurgling, and frothing at the mouth. He complained of stomach discomfort after breakfast, but that was certainly no cause for alarm. Though gripped with fear and terror, I fought to remain calm and focused to ensure that I could make good decisions and avoid making the situation worse. Immediately I yelled to my wife to call 911 while I positioned my son to avoid injury during his seizure. I literally thought to myself, “is my child going to die in my arms?” Finally, after an agonizing minute or two that seemed like an eternity, my son’s body relaxed and he began to become aware of his surroundings once again. Soon after, the ambulance arrived.
After our son was rushed to the nearest emergency clinic, a CAT scan revealed a large abnormality in his brain – what appeared to be a large cyst, about 2 inches in diameter. Based on the results of the CAT scan, our son was then transported by ambulance to the hospital. An MRI confirmed that the abnormality was indeed a cyst. Surgery was scheduled to cut drainage slits (fenestrations) in the cyst membrane to allow the spinal fluid to naturally reabsorb.
Having any surgery can produce anxiety, but this wasn’t just any surgery – it literally was brain surgery: cut a hole in the skull and poke instruments into the brain. It’s not something I’d want to go through, and it sure as hell wasn’t something I wanted my child to have to endure. Not only that, but we had to wait a week for an opening in the hospital’s surgery schedule. I wrote down some of my thoughts and feelings during this time. On the day of surgery, I wrote:
"9:20 am: Getting ready to leave for the hospital for [my son’s] surgery. I'm feeling very anxious. Almost hard to breathe at times. Everything is expected to go well, but still very nerve-wracking. Trying to remain calm and appear calm to avoid freaking out everyone else. I hate this waiting. Just want it to be over."
After the surgery was complete, the surgeon met with us while my son was recovering in the intensive care unit. He was in a lot of pain, and on strong antibiotics that caused extreme discomfort. Unfortunately, when they entered my son’s brain, what they initially encountered was not what they had expected based on the MRI. A new game plan would be formulated and another surgery was scheduled.
Thankfully, the second surgery went as expected. The neurosurgeon told us that the prognosis was good and that the permanent success rate of this type of procedure was approximately 90%. Soon my son was released from the hospital. Over the coming months, the incision healed and the subsequent MRIs indicated that the cyst was properly draining so that pressure was relieved on the surrounding brain tissue. Other than seizure medication and the periodic neurologist checkups and MRIs, life went back to “normal”.
10% Chance
Flash forward two years to December 2020. During a regular follow up consultation, the neurologist explained to my wife and son that based on the latest MRIs, it appeared that the cyst fenestrations had sealed up. The cyst was growing again. Another surgery was necessary.
Since the initial drainage slits had ceased functioning properly, the plan for the upcoming surgery was to attempt using another fenestration procedure if conditions looked favorable for that approach during the surgery. Otherwise, the backup plan was to install a shunt that drains the spinal fluid into the abdomen – a concept that really freaks me out. While shunt installation is apparently a ‘routine’ procedure, the potential complications are horrific: blindness, infection, overdrainage, even death.
“When the shunt allows cerebral fluid to drain from the brain’s ventricles more quickly than it is produced, the ventricles can collapse, tearing blood vessels and causing bleeding in the brain or blood clot, marked by severe headache, nausea, vomiting, seizure and other symptoms. This risk occurs in approximately 5 to 10 percent of people with shunts.” (Source: Johns Hopkins Medicine)
Neither procedure is guaranteed to last a lifetime, so even if a shunt was necessary, my son might have to go through this all over again at some indefinite future date. Or it could be a permanent fix. While the success rates are fairly high, there is still risk. Since having seizures is one of the potential symptoms of failure and my son will be driving in less than two years, this brings a whole new level of concern. Somehow, we often seem to focus on the worst that can happen.
Anxiety and Anticipation
Surgery was scheduled for early April of 2021, giving us four months to wait. Four months of not knowing what the future would hold. Four months to dredge up and replay the events of Christmas two years prior. Four months to reflect on what this means for my son and what he needs to process mentally. The day before the surgery, I reflected on the future:
“Either way, [whether fenestrations or a shunt are used,] this is very stressful... mostly because of what my son will have to go through. It certainly could be much worse, I know. But I hate that my son, brave as he is, will have to deal with this for the rest of his life, because any solution could stop draining at some point and require another surgery, even with the shunt.”
In the weeks leading up to my son’s next brain surgery, my anxiety level increased – slowly at first, but accelerating as the date loomed closer. However, I couldn’t afford to let fear and worry occupy my attention and cause me to lose focus on completing my responsibilities. I still had to be a good husband, father, employee, and leader. Not only is attending an extended ‘pity party’ non-productive, it’s also emotionally draining.
In order to cope with the stress and anxiety in the weeks leading up to the surgery, I intentionally avoided dwelling on negative outcomes or fear itself. Since I often do fall into the trap of entertaining worst-case negative fantasies, this was a bit novel to me, but very helpful. Several techniques proved useful:
- Avoid playing ‘victim’: It’s not personal, it’s not all about me, and I can’t change it. It’s not the end of the world. There is a high probability of success. No complaining or seeking sympathy.
- Focus on the positive: This is difficult for me, but I tried to focus on positive outcomes instead of negative possibilities.
- Talk it out: Especially in the last few days prior to surgery, I shared my thoughts and feelings with a handful of people. While receiving empathy does feel good, verbalizing my fears and focusing on the positive was more fruitful.
- Compartmentalize: Since dwelling on uncertainty and factors outside of my control changes nothing (except my anxiety levels), why bother? I visualized picking up my worry, placing it in a ‘timeout’ corner, and turning my back to it. I spoke to my worry, telling it that I would not give it any of my attention. I acknowledged it, then ignored it as best I could.
Fortunately, my coping mechanisms paid off. While my stress did increase as the number of days until surgery diminished, I was able to maintain focus and remain effective in my responsibilities at home and at work. Only on the night before surgery did I lose any sleep due to anxiety related to my son’s condition.
Perspective
Surgery was scheduled to begin around 7 am. After a couple hours of waiting, my wife and I were informed that the procedure went smoothly and our son was in the recovery room. A shunt was not necessary (whew!) and the fenestration was performed successfully.
Later that day, I visited the cafeteria located in the hospital basement in order to buy lunch for my wife and myself. In a somewhat comical twist, the panini heating machine that the cook used to heat my wife’s sandwich billowed smoke enthusiastically. Moments later, the acrid sandwich smoke set off the fire alarm throughout the entire hospital. After paying the cashier, I slunk away feeling guilty, only to be detained at the elevator along with several other hospital guests by the fire safety response personnel. Soon firemen appeared, fully decked out in their fire suits and hats, wielding their firefighting gear. For safety, we could not leave the area – neither by elevator nor by stairs.
As minutes slowly ticked away, the tension noticeably increased in some of the waylaid guests – worried parents of child patients. Like me, they had left their children for what they thought would be just a few minutes so that they could obtain nourishment. I soon came to realize that fenestration of a brain cyst, while certainly serious, is also comparatively trivial.
Eventually the fire alarms cleared and guests were allowed to leave the cafeteria. As a testament to just how aware and caring the entire staff is at Connecticut Children’s Medical Center, the fire safety personnel directed parents who appeared to have the most urgent need to return to their children into the first elevator car that arrived following the ‘all clear’ notice. Due to COVID-19 restrictions, that meant only three of us were ushered into that first car.
As the elevator rose, the two anxious mothers sharing the elevator with me briefly shared why they were here: cancer had returned to one child; severe pain (no cause offered) tortured the other child. Suddenly, brain surgery and cyst fenestration was no big deal. Mere hours following surgery, my son was recovering quickly, with miraculously little pain. His diagnosis was certainly not terminal, despite the possibility that he’d have to return for future surgical treatment. And we’d be released from the hospital later that afternoon. Honestly, I felt somewhat guilty – not only for taking a precious spot on the first elevator ride after the fire alarm (and for being involved in causing it in the first place), but also because through all of the self-centered anxious drama in my own brain, I had failed to realize that my son’s condition could be much, much worse. In fact, for some children and their parents right here in this very hospital, it was significantly worse. This humbling experience notably realigned my perspective.
You’re Not Alone
I don’t share this story to shine the limelight on myself out of dramatic vanity, but rather because, just possibly, you are going through something similar. Maybe your situation is much worse than ours; maybe our son’s experience puts yours into proper perspective. In times like these, it’s easy to feel like you’re the only one suffering; you aren’t. I wrestled with the decision to share my son’s medical history in such a public way; however, I believe it is important to let others know that they are not alone, whatever the cause of their struggle.
Additionally, difficult experiences produce wisdom, often forged in a crucible of suffering. Sharing hard-earned wisdom multiplies the positive results and brings deeper, richer meaning to the struggle. I offer the following bits of wisdom from my experience:
- Feeling fear and anxiety is normal (but don’t let it control you)
- In an emergency, don’t panic; force yourself to focus on what needs to happen so that you can make good decisions during the crisis
- To an extent, you can compartmentalize your anxiety to focus on the now
- Keep it in perspective: there is often someone who is worse off than you
- You’re not alone – whatever you’re going through, others have endured similar (or worse) situations
If this story has helped you in any way, please let me know. Also, if you have gained wisdom with respect to coping with stress and anxiety of your suffering child or loved one, please share what you have learned.
