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Breathing more easily
By Denise Dick
YOUNGSTOWN
222“I can’t hear him cry – that’s the worst part,” she said.
When he hurts or gets upset, Kaiba’s mouth opens, his face contorts, but no sound comes out.
Still, the fact that he’s with her at all is a testament to modern medicine.
As an infant, Kaiba’s airway kept collapsing. At 6 weeks, he started to turn blue at a restaurant with his family.
His father, Bryan Gionfriddo, began CPR.
Kaiba was transported to Akron Children’s Hospital, attached to a machine so he could breathe. Doctors told the family Kaiba’s condition was grave. They told April about an experimental procedure.
Doctors at C.S. Mott Children’s Hospital of the University of Michigan in Ann Arbor were testing airway stents made on a 3-D printer.
“It was our only choice,” April Gionfriddo said. “It was either ship him out to Michigan or get ready for his funeral.”
Kaiba was 3 months old when doctors did the surgery.
“He was pretty much a guinea pig,” April said.
April’s left forearm wears a tattoo of a heart with a ribbon bearing each child’s name draped across.
A halo atop the heart reminds her she almost lost her youngest.
Jasmine is 14, and Damen, 9.
Kaiba was born with a slew of medical problems including asthma, crisscrossed pulmonary arteries and blood clots. He’s endured nine surgeries.
The experimental surgery proved successful.
The stent allows Kaiba to breathe on his own through a tracheotomy tube in his throat. The device is designed to disintegrate and Kaiba’s tissue grow around it.
So far, that hasn’t happened. There’s some tissue but it isn’t strong enough yet.
When doctors tried twice to remove the trach, Kaiba was unable to breathe. The family will return to Michigan later this summer to determine if they can try again.
Because of the trach, Kaiba cannot speak or eat. A feeding tube inserted in his tummy provides nutrients.
Kaiba was in and out of the hospital several times leading up to and after the surgery. “He basically was in the hospital for a year,” April said.
Every time he took a breath, it could have been his last.
Having a sick little brother hit Kaiba’s older siblings hard too, especially Jasmine.
“It was horrifying,” she said.
Their relationship now follows that of a typical brother and his big sister: She calls him names, picks him up and teases him. Kaiba just smiles.
Cognitively he’s fine, his mother says.
“He knows what you’re saying,” she said.
He runs around playing like any other little boy.
“He’s my little flirt,” April said. He goes right up to the girls in his North Side neighborhood, puts a hand on their knee, smiles and kisses them on the cheek, she said.
“If you just look at him you could never tell that he was sick,” April Gionfriddo said.
He’s a preschool student at William Holmes McGuffey Elementary School, and he loves it.
The family’s hardship is ongoing.
April displays a thick manila folder with insurance information on Kaiba’s expenses.
“It’s up to $3.1 million through January,” she said.
Bills this year from February haven’t been tallied.
“He’s his mama’s $3 million baby,” said Mary Grate, April’s mother.
Kaiba’s supplies alone exceed $2,500 each month.
The trip to Michigan takes four hours one way. Someone has to suction out his trach as it begins to clog or sound “junky.” His feeding tube, which must be changed twice per month, may be permanent. Kaiba aspirates on fluids.
Because he cannot be left alone, a nurse visits the family each night to watch over Kaiba. That allows the family to sleep.
The fact that he nearly died, though, is never far from April’s thoughts.
When Kaiba takes his daily nap, she worries he won’t awaken.
Still, there is a silver lining.
April appreciates that because Kaiba was the first to have the surgery, she can offer information and support to parents of other children with collapsing airways.
It’s tightened the family bond, too.
“It’s brought us even closer together,” April said.