Meet Jairo, whose family was empowered by language and interpreter services
When Jairo’s mother first heard of his diagnosis, she felt overwhelmed. As someone whose first language is Spanish, worry consumed her. Language offerings at Children’s Health ensured she felt confident about his care.
Silvia felt a knot forming in her throat. Jairo was only a few weeks old, and she refused to accept something could be wrong with her baby.
Her pediatrician had called to tell her a newborn screening test found the presence of a protein called trypsinogen in Jairo’s blood, which can detect cystic fibrosis, a genetic condition that can affect a child’s lungs and digestive system.
She had never heard of the condition and didn’t know how it would affect her son.
The pediatrician referred Silvia to Children’s Health℠, home to the Claude Prestidge Cystic Fibrosis Center at Children’s Health — the nation’s only Cystic Fibrosis Foundation-accredited program that’s co-directed by a pediatric pulmonologist and a pediatric gastroenterologist.
Silvia’s only goal was to get the best care for her newborn, but as someone whose first language is Spanish, she felt anxiety wash over her.
Memories from past experiences at hospitals where she felt isolated because of language barriers flooded her mind.
“It makes one feel like they’re nothing. You want to say and ask so many things, but you can’t,” Silvia said in Spanish. “You have the words, but you don’t know how to say them in English, so you stay quiet.”
Although she can understand and speak some English, she isn’t fluent, and she worried about the information she might miss throughout Jairo’s care journey.
“It’s frustrating when you don’t understand what someone is saying,” she said.
Access to language services
At Children’s Health, care team members confirmed baby Jairo’s cystic fibrosis diagnosis after some more testing, DNA analysis and thorough lab work.
The team also connected his family with the interpretation services available at Children’s Health — all of which are free of charge and benefit from critical philanthropic support.
Many people come in just like me as non-native English speakers. They don’t know much about their child’s diagnosis, or like me, weren’t aware of its existence. These services allow us to learn and understand.
— Silvia, Jairo's mom
Cystic fibrosis causes children’s bodies to produce thick mucus and digestive fluids, which can build up and cause blockages, damage or infections.
Jairo’s early diagnosis made him a frequent visitor at Children’s Health, where physicians closely monitor such newborns during monthly checkups for the first six months of their life. They then continue with routine checkups every two months until they are 1 year old.
On top of ensuring an interpreter is present during their hospital visits, Jairo’s care team is patient with Silvia, ensuring all questions she may have about a new treatment or medication are answered.
They make her feel confident and comfortable asking them to repeat themselves if she doesn’t understand something.
Language interpretation services — including over the phone or video — are offered to patient families in hundreds of languages 24 hours a day, seven days a week to help team members better communicate with patients and families. The offerings depend on the generous funding from donors, who help ensure the services are available to the nearly 50,000 patients and families who visit Children’s Health each year with a preferred language other than English.
“Without donations, a lot of children might not be here today,” Jairo said.
Coping with Jairo’s diagnosis
In the beginning, after Silvia explained Jairo’s diagnosis to her husband, he asked her not to tell their extended family. He worried they would feel sorry for their son and treat him differently.
Silvia initially struggled to speak about her baby’s condition, with her words often dissolving into sobs, so she agreed.
While visiting Children’s Health for Jairo’s treatment — which included therapies that cleared his airways or helped with digestion — the hospital’s Child Life specialists helped his mom cope with his diagnosis. Child Life specialists are available to patient families at no cost and instead rely on philanthropic support.
Speaking with them empowered Silvia to tell her extended family about Jairo’s condition. If someone expressed pity for his diagnosis, she confidently assured them that he would live a full life and asked them to avoid treating him differently.
“They helped me accept my child’s condition and learn how to talk about it with others,” Silvia said. “It’s not that it doesn’t pain me, but I can talk about it now.”
Lifelong bonds
Some at Children’s Health have gotten to know Jairo from the moment he arrived at the hospital, where he’s been a patient for roughly 10 years.
He doesn’t see his care team members as physicians or nurses, but as his friends. They not only provide him with medical care but also find time to play cards or video games with him during his visits.
“He jokes, talks and laughs with them. Seeing that gives me strength,” Silvia said. “They’ve seen him grow.”
A chaplain who got to know the family will sometimes put on a luchador, or wrestler, mask, play music on his phone and shout like a ring announcer as he enters Jairo’s room.
“Jairo will start jumping on the bed and pretend he’s a luchador,” Silvia said. “That makes me feel so happy. It’s as if nothing else matters, only that my son is happy.”
Now 13 years old, Jairo continues to visit Children’s Health each month for checkups. Despite his ongoing care for his cystic fibrosis diagnosis, he has so much energy, Silvia said.
He learns alongside me and teaches me things I might not understand immediately. He’s very smart. I’m not sure how he might be feeling inside, but he’s very brave. He makes me feel brave.
— Silvia, Jairo's mom
Jairo, who describes himself as a “strong patient,” isn’t one to shy away from asking people blunt questions, often making his mom blush. He loves wrestling, playing video games and soccer and dreams of becoming a barber someday.
“Barbers make good money,” Jairo said. “I also hope to be healthy and to take care of my family.”
His family’s biggest hope for him at the moment is for him to find a donor match to receive a lung transplant.
“When you walk around Children’s Health, you meet so many strong children like Jairo who are fighting every day to live,” Silvia said. “We can all learn something from these children.”
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