Six years ago, when Fairview resident Laura Lim was delivering her third son, Laynson, she expected the procedure to be ‘business as usual’. However, this was not the case, and she was quickly plunged into her new normal. After taking his first breath, Laynson immediately turned a dusky complexion. He was rushed to the NICU (Neonatal Intensive Care Unit) where he was intubated. His CO2 (carbon dioxide) level was 99, Lim explains that the normal level is 35 – 45. Meanwhile, Lim was waiting in her post-op room to feed her baby. She had not been told what was happening with Laynson. Her husband called her to tell her that Laynson had been taken to the NICU because of a breathing issue which the doctors had told him was nothing to worry about. 24-hours after delivering Laynson, Lim described the meeting with the first doctor who came to update her, “It was 6 a.m., I still had my epidural. The first thing he said was, ‘Your son is abnormal.’ The doctor started questioning me: Did you take drugs, etc. It felt like he was accusing me…that the problems my son had were because of something I did. I started crying and said I wanted to go see my son.”
Two of Lim’s sisters, at separate times, came to comfort Lim in the NICU, but had been misinformed that baby Laynson had died. Lim recalls the necessity to vehemently state twice, “My baby is not dead!” When she was discharged, Laynson had to stay at the hospital, “It was such a hard thing to go home with an empty car seat.”
Laynson was diagnosed with Congenital Central Hypoventilation Syndrome (CCHS) which is sometimes known as Ondine’s Curse. “… (CCHS) is a rare lifelong and life-threatening disorder. CCHS affects the central and autonomic nervous system which controls many of the automatic functions in the body such as heart rate, blood pressure, sensing of oxygen and carbon dioxide levels in the blood, temperature, bowel and bladder control, and more. The most recognized symptom of CCHS is the inability to control breathing that varies in severity, resulting in the need for life-long ventilatory support during sleep in some patients or all the time in others. There are estimated to be 1000 – 1200 cases of CCHS world-wide. CCHS affects males and females equally. Currently, there is no cure for CCHS.” (rarediseases.org)
Lim simplifies the diagnosis, “The disease is mainly about breathing. Any bodily function controlled automatically doesn’t work well for Laynson. As soon as he’s tired or falling asleep, his breathing is suppressed. If he doesn’t have his ventilator hooked up, he will die in his sleep.”
Everywhere Laynson goes, including school, he must have a ventilator and AMBU bag (manual resuscitator or "self-inflating bag"). The Lim family has hired nurses to be with Laynson 24- hours a day, which includes during school. When he sleeps, the vigil is even more critical. The nurse, Lim, Laynson’s father CJ, or grandmother Rose Wan must adjust the ventilator when Laynson moves in his sleep and his CO2 levels must be constantly monitored.
Lim said when Laynson was younger, he had blue spells when he was upset and his oxygen levels would reach zero. She said, “His body would jerk, but he wasn’t having a seizure. I would take the AMBU bag and bring him back to 100%. Every time I would get shaky because I didn’t know if this would be the last time.”
When Laynson was 18-months-old, his nurse screamed for help around midnight. His tracheostomy was out and he was lifeless. The nurse administered CPR and Lim tried all the ways she knew to try to bring him back, but his pulse oxygen machine showed zero pulse and zero oxygen. Paramedics arrived and were able to put the trach back in and bring his levels back to 100%. At the hospital, it was unclear if the 10 – 12 minutes he spent lifeless would leave him brain dead. In the ICU, Lim recalls it was 4 a.m. when she heard Laynson’s young voice say “Cars”. Laynson could see the cars through the window. He did not have brain damage. The doctor could only explain this development by comparing Laynson to a person who runs a marathon. He said the blue spells were like running miles a day which trained him to be able to survive this “marathon”.
When diagnosed, Lim asked about the possibility of taking a family trip to visit a very ill relative in Malaysia. The doctor said, “You’ll be lucky to ever get out of Dallas.” Lim said, “I’m pretty rebellious. We’ve been to Malaysia twice, to Europe and on cruises.” She explains that traveling is complicated in that they have to travel with a lot of supplies and receive approval from the airlines and doctor. This past winter break the family enjoyed a vacation skiing in Taos. Lim boasts, “Laynson made it to the green slopes.”
Laynson is a student at Puster Elementary. He enjoys playing with Legos, watching American Ninja Warriors and learning about countries on his iPad. He said his goal is to become an American Ninja Warrior. Lim said she has many goals for him, but the one that rises to the top is, “That he will one day have a group of close friends who will grow up with him and understand his situation.” Lim requests that parents, who have children who are Laynson’s classmates, talk to their children about his situation and help them to be accepting.
Donations can be made at cchsnetwork.org.