Almost 9 years ago Laynson’s mom was getting ready to deliver him, expecting the procedure to be business as usual. However, this was not the case and she was quickly plunged into her family’s new normal. Laynson was born on April 29th, 2012, and after taking his first breath, he turned a dusky complexion and was rushed to the NICU. He was intubated with a high CO2 level of 99 (normal level is 35-45). After he was extubated a few days later, the doctors were saying that they think he was born with a premature lung even though he was full-term. Unfortunately, the doctors at the local hospital where Laynson was born were not familiar with his condition because it is so rare. Due to rarity and misunderstanding of the underlying process, Laynson’s CO2 levels were not being monitored, and on May 19th, 2012, he quit breathing for 2 minutes. The doctors managed to resuscitate him, but he was lifeless by the time we got there. That’s when the hospital workers found out that Laynson’s CO2 level was at 199 and we quickly realized that we must take him to Children’s Hospital in Dallas.
As soon as Laynson got to Dallas, the neonatologist informed us that they suspected Laynson has CCHS, which is short for Congenital Central Hypoventilation Syndrome; sometimes known as Ondine’s Curse. This is a rare lifelong and life-threatening genetic disorder. CCHS affects the central and autonomic nervous systems which control many of our automatic functions such as heart rate, blood pressure, sensing of oxygen and CO2 levels, temperature, and more. The most recognized symptom of CCHS is the inability to control breathing which varies in severity, resulting in the need for lifelong ventilatory support. It affects Laynson most during sleep, but it can be different for others. As soon as Laynson is tired, falling asleep or sick, his breathing suppresses and if he does not have his ventilator hooked up, he will die in that sleep. He was officially diagnosed on June 22nd, 2012 and had his trach placed 6 days later. Laynson finally was able to come home after 156 days in the hospital.
The first few years of Laynson’s life were the most difficult. Laynson would have blue spells where he would hold on to his breath, his oxygen would go from 100 to 0 in less than 5 seconds, and we would have to use the ambu bag on him with our oxygen concentrator. His record day was 22 times and 5 back-to-back spells. The scariest day of our life was on January 24th, 2014 when Laynson was playing on his highchair and suddenly he collapsed. The nurse yelled for mom and grandma and as usual, we tried to bag him with O2 but this time was different. His trach had come out, and we were not able to resuscitate him. Laynson was hooked on to his pulse ox machine and it registered 0 pulse and 0 O2. The nurse continued doing chest compressions and we continued trying to give him O2 through the mask covering his trach site. Finally, the paramedics arrived after 12 minutes. They managed to resuscitate him, but by then Laynson was completely lifeless. The paramedics brought him to the hospital, and he was not responding. The fear of brain damage as well as the sentence that a mother fears most crossed my mind, which is, “can we turn off life support?” It was the longest night of our life. Finally, they wheeled him to a room, and the very next morning he woke up, pointed out to the window and shouted CARS!!! We were all relieved, but the doctors still today cannot tell us what happened nor how he did not suffer brain damage from that incident. The closest explanation the doctor could give us was that Laynson was like a marathon runner: the analogy was that Laynson’s daily blue spells were like running a few miles each day, building up his body’s tolerance to having little oxygen. So, when he had to run a marathon, it was not as hard on his body as opposed to someone who has never run in their life and would never have made it to the finish line.
Laynson LOVES to go to school, and his favorite topic is Geography. He can tell you all the capitals in the US and capitals of countries that most people have not even heard of. Laynson also loves to travel! We were once told that we would be lucky if we ever got to leave town with him, but it will always be with help. We have never let anything confine us. In fact, Laynson has been to Europe (France, Switzerland, Portugal, Italy) multiple times and Asia (Malaysia, Singapore, Thailand, Hong Kong) several times. Laynson also loves cruises and has been on many cruises including Alaska.
Traveling with Laynson is not an easy process. We must get doctor’s approval, approval from the airlines and we must also take lots of supplies with us, but that does not stop Laynson from living the dream! 2020 was a hard year as we were not able to travel internationally, so we opted for a RV trip and Laynson managed to visit 9 National Parks in the US. The other thing Laynson loves to do is skiing. Laynson started skiing at 4 years old by learning through the adaptive ski lessons from various resorts. Now Laynson has mastered skiing and he loves to go to the black routes especially if it has moguls!
We have learned that nothing will stop us if we want to do something and that is what we have been telling Laynson as well: to never let his diagnosis define him. Our favorite quote for him and his life is this: “Life isn't about waiting for the storm to pass. It's about learning how to dance in the rain.”
