Tiny Quentin Kamps lies on his tummy and struggles to push up his head. Slowly, surely, he raises it an inch.
You can see why people call him a fighter. But his mom doesn’t see it that way.
“He’s a lover, not a fighter,” says Jennifer Kamps, scooping up her blue-eyed, red-haired baby boy. “He loves people, loves his family. He loves to be held.”
That bond with family has pulled Quentin through some scary times during his first 11 months of life. Looking at the chubby-cheeked 16-pound boy, it’s hard to imagine him at birth―a 2-pound, 2-ounce fragile infant, born weeks too soon.
Along with his family’s love and intensive medical care, Quentin has benefited from the Peter and Joan Secchia CarePartners Program, an innovative service at Spectrum Health Helen DeVos Children’s Hospital that helps families with medically complex children navigate the health system.
It helps arrange appointments with a child’s many specialists in an efficient, compressed time frame. Care coordinators also help families understand medical information and treatment plans, and they provide referrals for support services such as social work and financial counseling.
Now that Secchia CarePartners has opened a lounge for those enrolled in the program, families like the Kamps also have a home base where they can relax between appointments.
“This really is intended to be a low-stimulation, quiet, restful place,” said CarePartners coordinator Michelle Lancaster, RN, BS. “It really is a very comfortable place.”
The kid-friendly lounge offers colorful chairs and couches, a TV, toys and books. It also includes three private rooms for families who need more privacy. Parents can store or prepare food in the kitchen and keep belongings in a locker.
“That is awesome. That is going to be so nice for us,” Jennifer says.
Because she avoids crowded places and exposure to illness for her son, she often waits in her car between appointments. Not the most comfortable place to pump breast milk, give Quentin a bottle or entertain her older kids.
CarePartners, which began serving families a year ago, has enrolled 120 patients. It is open to families who have three or more specialty providers, Lancaster says.
The Kamps became involved in Secchia CarePartners when Quentin came home from the hospital at 6 months of age.
He had already endured a host of medical procedures.
Before birth, Quentin and his identical twin, Connor, had a build-up of fluid in their chest cavities. Although Quentin’s got better, Connor underwent surgery in utero to place shunts to drain the fluid.
Jennifer was only 25 weeks pregnant when her water broke. The twins were born May 24, 2015.
“Connor passed away the day he was born,” Nick says. “He had already been through so much. He didn’t have enough time to heal from everything.”
As they grieved for Connor, the Kamps cared for Quentin.
For the first 50 days of his life, Quentin received powerful antibiotics to help him battle an E. coli infection in his bloodstream. He remained on a ventilator for four months.
He went through two rounds of infections in his intestine as well as one in the urinary tract.
There were days when his mom couldn’t even imagine what the future would hold for him.
“I just wanted him to make it and not be in pain anymore,” she said.
He underwent several surgeries―to place a central line, repair hernias and get a feeding tube.
On Nov. 23, six months after his birth, Quentin left the hospital.
The Kamps enjoyed having him at home with their other children, Shawn 9, Lucy, 7, and Cole, 5.
But they were amazed to find he had an appointment with a doctor every day of the week. Even setting up all the appointments proved challenging.
The Secchia CarePartners program helped streamline that process by condensing appointments to two days a week. And that helps Quentin by minimizing the disruption to his life.
“It is important that a baby has a calm environment and time to eat and sleep,” Nick says. “It has definitely added quality of life for him and for us.”
Quentin continues to see specialists for hip dysplasia and chronic lung disease. On March 10, he had shunts placed in his brain to drain excess fluid.
He also continues to grow and interact with his family. He coos and smiles and cuddles. And on warm spring days, he can go outside in the sunshine.
His parents treasure these simple pleasures.
“He’s happy,” Jennifer says. “And our family is back together again.”