Medicaid Matters for Kids Mondays - Paige

Paige looks like a typical toddler, a happy 4-year-old filled with laughter and boundless energy. The little plastic t-shaped device attached from her neck is the only thing that gives away what is decidedly different about this lovable kid.

It is a tracheostomy tube — trach tube for short — that is inserted into a hole in her neck and windpipe, allowing her to do what most people take for granted: breath.

“Ordinarily, babies come out knowing how to breathe,” says Paige’s mom, Amber. “Paige didn’t. She’s learning to breathe from her mouth and nose.” The trach tube was put in at Hasbro Children’s Hospital, where Paige is in the hospital’s ventilator integration program (VIP), which provides medical care for infants, children and adolescents with chronic respiratory problems and those dependent on medical technology.

Paige was born with a giant omphalocele, a type of abdominal wall defect where the bowel, liver and other abdominal organs protrude out of the abdomen into the base of the umbilical cord. “Because of that, her lungs didn’t develop normally, and the blood vessels didn’t develop normally during her prenatal life,” says Dr. Karen Daigle, director of the Hasbro Children’s Hospital VIP program. “As a result, she’s had significant surgical issues and was very sick as a newborn. She developed chronic respiratory failure and was on a ventilator.”

Paige’s first surgery was at 2 weeks old, her mom says, at Hasbro Children’s Hospital when a team expanded her abdomen to prepare for future surgeries. At 4 months old, Paige had open-heart surgery at Boston Children’s Hospital to patch up an atrial septal defect — a hole in the wall between the heart’s upper chambers. As of mid-winter this year, Paige has had 24 procedures in all — nearly all of them at Hasbro Children’s Hospital.

“ For many parents of kids with medical complexity, every day has its own set of challenges. Nobody ever expect their kids to have medical issues. It is scary,” says Amber. “We advocate so that others know they are not alone and to support those who can relate to our world.  There will always be diseases, sickness and accidents, so everyone at one point or another will be impacted. When that happen, wouldn’t you want your kids to receive the best care at the hospital?”

Amber shared that after living in the PICU with Paige for six months, the family understood that hospitals get most of their funding through donations and fundraisers. “These events provide opportunities for research, training and technology. Now that we know how hospitals work, we feel like it is important to spread the knowledge to others,” says Amber.

“Hasbro Children’s Hospital has been our home away from home; the nurses, the doctors, the assistants — all of them are really like her aunts and uncles. It’s a huge support group. They’re always there, always willing to explain things to us, to get us through it, ” says Cliff, Paige’s dad.

Paige and her family rely on the Katie Beckett Medicaid Waiver for Paige’s medical bills, supplies and medications. The waiver allows kids like Paige to be eligible for Medicaid coverage and receive care at home instead of in an institution. “Our normal health insurance does not cover one-on-one nursing care, so we solely rely on Medicaid to provide nursing care for Paige,” says Amber. “If Medicaid was cut or non-existent, both Cliff and I would have to leave our jobs and we could lose everything.” 

“We are forever thankful to the hospital staff from the surgeons, attendings, doctors, nurses to the cafeteria workers, custodians, and the parking valet who always saves us a spot and greeted us with a smile. Our family see you all and your importance. We appreciate everything each person did at Hasbro Children’s Hospital to save my daughter’s life multiple times. Miracles happen behind these walls, so we want to share our story, experience and stay involved. So having Paige as the Children's Miracle Network Champion Child is the least we can do to give back,” says Amber. 

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