Healthy Kids - Spring 2021

BROTHERLY LOVE An excellent prognosis means Jacob has more time with his best buds

HE SHOULDN’T BE HERE, AND WE ARE VERY EXCITED TO CELEBRATE HIS LIFE AND EVERYTHING HE’S BEEN THROUGH — KATIE, JACOB'S MOM ‘‘

will have a functional voice. He’s working with our feeding therapist and he’s making progress. We will continue to watch him over time, and there will be things we can do to help him progress as he gets older.” On Feb. 5 of this year, Jacob turned 2 and celebrated like any other toddler: with dessert and a mess. “He had a Mickey Mouse ice pop—because he loves ice cream. This was the first time we got to celebrate his birthday without a trach and he was able to enjoy a sweet treat— it was so exciting!” his mother says, adding that, even though his battle isn’t quite over, his milestone birthday was one she wasn’t sure she’d get to see. “For the rest of his life he’ll have to see a cardiologist, and there’s a possibility that he could need another surgery,” she says. “But for now, I’m enjoying another day with him. He shouldn’t be here, and we are very excited to celebrate his life and everything he’s been through. I couldn’t imagine having my chest split open or having any of the procedures he’s had. But he’s a very strong little guy and every day with him is a blessing.”

Jacob’s airway endoscopically—through the mouth, with no neck incision—to open the area where his vocal cords had paralyzed shut. “In a slower fashion, we would wait six months to remove the trach,” Dr. Brigger explains. “With the approach we used, combined with the motivation of Jacob’s mom, we were able to remove Jacob’s trach in four weeks.” Katie Griffith was amazed. “I have no idea how Dr. Brigger was able to do the surgery without going through Jacob’s throat, but he did, and on July 29, 2020, I pulled out Jake’s trach for the last time,” she says with relief and gratitude. Jacob still needs one more procedure with Dr. Brigger, as well as one more cardiac surgery. But he’s making excellent progress. He’s working with a physical therapist and has caught up to where he should be at his age—walking quickly and nearly running. While he still has a feeding tube, he’s also learning to eat by mouth. He’s learning sign language, and his family and physicians are hopeful his vocal cords will work enough for him to speak someday. “Jacob’s prognosis is excellent,” Dr. Brigger says. “He may never be an opera singer, but he

26 HEALTHY KIDS MAGAZINE SPRING 2021

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