CCHS Stories

 

Yi Xin


Luke


Noah


Emily


Joany


Nika


Sean


Tiago


Yi Xin

yixin

“Yi Xin was born on 3/12/12. Her mutation is 20/25. We live in Malaysia. My daughter developed respiratory distress a few hours after birth. She was put on NCPAP and transferred to the hospital. At the hospital, she was noted to be dusky and desaturated on NCPCP. She was intubated and ventilated for one day before being extubated. She was treated with antibiotics after 7 days discharge. After 1 month, she began vomiting, had poor feeding, and suddenly turned blue. So I sent her directly to the emergency department and she was intubated after admission for recurrent apnea with desaturations. At the hospital she was unable to tolerate CPAP and developed apnea on CPAP. Her respiratory rate during sleep matched the ventilator rate. So after a 1 month stay in PNICU she was diagnosed with CCHS. The doctor planned for tracheotomy and to use a ventilator at home. She was on the ventilator 24 hours until she was 8 months old. I trialed her on and off the ventilator. After 1yr old she uses the ventilator only when she sleeps. Now she is well and can eat, speak, and walk as a normal child!”

Luke

luke

“Luke was born on April 26, 2012. It took three weeks and endless tests to figure out why this otherwise healthy baby had difficulty breathing only when asleep. The diagnosis of CCHS was frightening however, Luke has proven that it is only a small part of who he is! He has two big brothers who have taught him to jump on furniture, build sandcastles, kick a soccer ball, and do all the things that little boys like to do! Luke has a trach and sixteen hours a day of home nursing, which have helped him remain very stable. Our family is determined that Luke will live a life full of possibilities versus limitations!”

Noah

noah

“Noah was born August 2009. Shortly after his birth, he turned blue around his mouth and was sent to the NICU. After a week, he was put on a ventilator. Many tests were performed on him until we got the CCHS diagnosis when he was over a month old. He spent 4 months in the hospital. Today, he is a happy, healthy boy. He is attending preschool and loving life. He doesn’t let CCHS stop him from doing anything. He swims, travels, has sleepovers with his grandparents and lives life to the fullest. The Mighty Noah is our hero. If you would like to learn more about him and his life with CCHS you can read my blog yourcurseismymiracle.blogspot.com.”

Emily

emily

“Emily is five years old and was diagnosed with CCHS 20/25 on New Year’s Eve 2014. She loves swimming, karate, and playing with her friends. Emily has had several episodes of respiratory illnesses that required her to be hospitalized and treated with supplemental oxygen. After years of no diagnosis, we finally got a test done to “rule out” CCHS, but the results confirmed it. Knowing the cause of her episodes has helped us begin to understand what she needs. She is due for a bipap machine next month and we are expecting great results and less hospital stays for our sweet girl!”

Joany

joany

“Joany was born on the 15th of July 2014 in Aix en Provence, South of France. He is CCHS 20/26, trached and vented while sleeping and taking his bottle. He is a very happy baby, always smiling. He loves playing with his elder sister and his twin brothers. At 10 months, he enjoyed his first ski holidays in the French Alps….”

Nika

nika

“Nika was born in December 2011. She is full of energy and enthusiasm. It’s hard to believe she spent her first three months in the hospital. She gradually increased sprinting time to waking hours by 6 or 7 months, and is trach/ vented for sleep. Nika attends preschool two days a week with her nurse and loves it. She’s in dance class and loves music and Disney :). She is quite talkative, but is starting speech therapy to improve articulation. Thank you CCHS Family Network for all that you do :)”

Sean

sean

“Sean is currently 6 years old. He was born September 17, 2010. He is 20/27 and has Hirschsprung’s Disease, vent dependent while sleeping only. It took a long time to get Sean’s diagnosis because 11 hours after birth he started seizing and a level IV brain bleed (IVH) was discovered so his poor breathing was thought to be due to the bleed. Miraculously the brain bleed started healing and he looked to make a full recovery except for this issues of still not breathing well, especially when asleep. Once Hirschsprung’s was diagnosed, CCHS was tested for since the two can go together. He was finally after two months diagnosed and trached. The first year (or two) was rough with many surgeries, mostly GI related, but now he is strong and thriving and just started preschool. He loves swinging at the park, the Wiggles, Yo Gabba Gabba and wrestling with his two older sisters.”

Tiago

tiago

“Tiago was born on October 2nd, 2008, in Cuiabá, Mato Grosso, Brazil (Pantanal’s land). As CCHS is very rarely diagnosed in our country, only at 6 months Tiago had his 20/27 CCHS diagnosed. This was the worst period. After we knew what Tiago had, our life got better and is getting better each day. When we learned of the CCHS Network we got a lot of support and information about how to live and take care of our kid. Tiago was trached at 3 months, and was at hospital until 5 months. At this time he had to use vent 24h and was feeded only by gastrostomy. Now he uses vent only when asleep, and eats solid food by mouth. As most parents say, I see that life gets easier as he grows, and reading the testimonials at CCHS Network I truly believe that Tiago will have a future life with rich experiences like his two siblings (nose breathers), Gabriel, older brother, and, Ana Elita, younger sister.”

Kotoha

“Kotoha, 5 years old, enjoys playing with her friends at kindergarten more than anything else. Her little sister, Cocoro, is also her source of energy. Kotoha loves dancing and takes lessons in piano, singing and ballet.She wants to overcome her fear of swimming this year. Kotoha is trached. She was born with Hirschsprungs and a cleft palate. She has a NPARM CCHS diagnosis.”

Julius

“Julius was born on March 1, 2007 in Houston, TX and his illness came as a surprise to us. We received the diagnosis right before he turned 1 month, and he has been trached since. We weaned him to minimal mechanical support at one year of age, and he has been stable since. Julius now attends Head Start and has been doing well. We go through ups and downs with different issues but keep the faith that things will only get better.”

Myles

“Myles was born on Halloween 2010. He was trached at six weeks after receiving a diagnosis of CCHS 20/25. We learned to care for him over the next six weeks in the NICU. We were elated to finally take our beautiful baby home in January. We are hoping to go to Chicago soon and plan to have pacers implanted in a few years. Myles is a happy little boy with a mop of hair, a ton of teeth and a lot of ambition to walk before he turns one! Every day with him we are in awe of his contagious smile and personality. He lights up our lives and brings us more joy then we could imagine. We thought we knew love, then we had Myles.”