Cyril Evans celebrated his first birthday at Akron Children’s Hospital – the place he’s called home since shortly after his birth at 31 weeks gestation.
In the pediatric intensive care unit’s (PICU) conference room, several family members joined hospital staff in wishing Cyril well on Nov. 30, one day after his actual birthday of Nov. 29.
For his parents, Mallory and Jon, being able to mark this milestone with their second child was a real joy.
“It’s amazing,” said Mallory, reflecting on the struggles of the past year. “On the other hand, he did it, because wants to be here. He wants to be with his family.”
Diagnosed with a rare genetic condition, uniparental disomy 14 (UPD14), at 2 weeks of age, Cyril’s first year was a series of ups and downs. “Up until a month ago, it was one thing after another,” said Jon.
Cyril has dealt with RSV and cold viruses but also suffered a cardiac arrest after surgery to put in his first trach. That was a scary experience that resulted in Mallory and Jon getting a call at 10 at night to come in because doctors thought Cyril might not make it.
There was also a chance that Cyril would have brain damage after that setback – but the Evans are relieved that didn’t happen.
One of the characteristics of UPD14 is a bell-shaped rib cage, Mallory said, which affects Cyril’s lungs. But the shape should become more normal as Cyril ages.
“Our hope is that in 4 or 5 years he will be done with the trach,” she said.
Cyril also has low tone but is now getting plenty of tummy time and starting to push up. Mallory does believe that he’ll be on the move one day.
The Evans are feeling optimistic about Cyril’s future and right now are planning to take him to their Northwest Akron home in January. For now, they are working to get home care established, as Cyril needs to be monitored 24 hours a day because of his ventilator and trach.
While Cyril’s will and his parents’ positive attitudes have certainly helped him hit the 1-year mark, Mallory said the care he’s received at Akron Children’s has been key to him overcoming the many health obstacles he’s faced. He sees doctors in a range of specialties, including pulmonology, immunology and otolaryngology.
Mallory said Nurse Practitioner Tammy Camelli has been a great provider, planning special activities so Cyril can have typical kid experiences – like stroller walks and a bath in a normal baby tub. She also arranged for him to get outside for the first time on Sept. 22.
“Tammy has been amazing at arranging things like that,” Mallory said.
Music Therapist Liz Germano has also worked with Cyril from the time he was just a few weeks old and very medically fragile. At that time, Mallory had requested a recording of Cyril’s heartbeat. Liz began working with Cyril regularly after he was moved to the PICU.
“At first my goal was to just provide positive sensory stimulation, as he is on constant precautions and cannot leave his room, and was not very mobile,” she said. “But I treated him like any other NICU baby, provided singing and positive touch and relaxation when he was agitated. But as he grew and became a little more stronger, we began doing movement songs like ‘Wheels on the Bus,’ and moving his arms and legs to music, as well as introducing instruments like the baby shaker and ocean drum. It’s been in the last couple weeks that he has started really developing and doing ‘normal’ developmental tasks, like reaching for the baby shaker, shaking on his own, and bringing objects to his mouth.”
Mallory said this interaction has been a blessing for Cyril. But Liz said this little patient has also inspired her in a big way.
“Cyril has taught me that what I do – music therapy – is important, healing and effective,” Liz said. “Cyril has taught me to believe in myself again and my skills as a music therapist.”
First Birthday Celebration
At his party, Cyril was entertained by a sloth theme. Mallory said that sloths are his “spirit animal,” and Cyril has already amassed quite a collection of stuffed sloths as well as a collection of books, including “Cyril’s Big Adventure.”
“They’re cute and you don’t expect much of them, but they can kick butt,” Mallory said.