As recent immigrants to Boston from Honduras, Jessy and Edgar didn’t have an easy life, but they were happy. They were both working full-time, raising their teen son, and finding their place in the U.S. They were moving forward.
Four years after their arrival, the family was elated to be expecting another son. When Kendall was born three months early, they lost the little stability they had. But Kenny would gift his family with a purpose, joy, and empathy they never knew existed.
Miracles do exist
Kendall, or “Kenny” was born at Boston Medical Center on July 17, 2018, weighing one pound. “They fought to save my baby every day for 29 days,” remembers Jessy. “Those were 29 days of anguish … like nothing I could have ever imagined feeling or surviving. I just prayed and prayed.” Jessy keeps the words of Dr. Alan Fujii, Kenny’s neonatologist, close to her heart — “We are scientists, but miracles do exist. Keep praying for Kenny every day.”
At 30 days, still fighting for his life, Kenny was diagnosed with necrotizing enterocolitis (NEC), a serious intestinal disease, and transferred to Boston Children’s Hospital for emergency surgery. Jessy rode in the ambulance with Kenny, holding the pump for his lungs. “When we arrived, a huge weight was lifted off my shoulders,” she says. As the paramedics opened the ambulance door to receive Kenny, they smiled at Jessy and said, “this boy is strong!”
Kenny, now 22 months and 22 pounds, has been living in the Intensive Care Unit (ICU) at Boston Children’s ever since. He is still strong, but with a feeding tube, a ventilator and more interventions planned, he’s not strong enough to go home. At Boston Children’s, the only home he knows, he spends his days alert, happy and responsive … and everyone on the floor adores him. “This boy is so popular,” beams Jessy. “He has so many fans. All day long, the nurses come and go, come and go … they love him so much.”
Parenting a child with a complex medical condition
Though it was a tough hit to their finances, Jessy quit her job when Kenny was born to dedicate herself to his care. She takes the subway to Boston Children’s every morning to tidy Kenny’s room and clean, feed and spend time with her son. “He might be asleep but when I get there, but he’ll open his eyes just to see me, and then go back to sleep,” she smiles. Edgar arrives after his shift is over to visit and bring his wife home. It may not be a typical family routine, but it’s a common one for families of children with complex medical conditions.
“It hasn’t been an easy road, but I always try to stay positive,” says Jessy. “And I don’t pity him. I raise him with love, not pity.”
Like all parents, Jessy has moments of sadness and desperation, where she feels like giving up, but she tries to stay focused. “I say to myself, ‘You can’t run away. Kendall needs you.’ We don’t know how long he will be here, so we celebrate every occasion, every holiday, every single day he has.”
Finding a support system
No matter the complex condition a child has, it can be a hard and often isolating for the family. “When I send photos and videos of Kenny to friends and family, they tell me that he looks strong and active and should be home … they just don’t understand,” says Jessy.
At Boston Children’s, she has found support. “I have developed such incredible relationships with other parents here. We visit each other’s rooms, we shop for each other and cook for each other when we’re home. Even when they leave with their child and I’m still here, they call and write me. We share something special. When you arrive at Boston Children’s, that’s when you begin to understand so much. It’s when you become aware and sensitive to everything. It’s when your heart opens. Here, I have cried for myself and for others.”
Lately, though, Jessy hasn’t been crying. She has her routine down and she has her family and her Boston Children’s “family” to lift her up. She attends a monthly support group for Spanish-speaking parents in the Hale Family Center for Families — “it’s a way for me to take care of myself emotionally so I can take better care of Kendall,” says Jessy. “Everyone tells me, ‘Ay, Jessy, you are always happy.’ Of course I am. My problems are small compared to others. Kendall is alive. He’s breathing. And it’s a beautiful day outside.”
Learn more about the ICUs at Boston Children’s.
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