Awaiting Transplant … Son’s Care Journey Inspires Family Gift Toward New Infusion and Dialysis Centers

When Matt and Kristen Daly were invited to serve on the Steering Committee for a new Infusion & Dialysis Center at Connecticut Children’s last year, they didn’t have to think twice. “We were honored to be asked,” Matt said.

And when the Glastonbury residents were asked to consider a leadership gift toward the construction of what will now be two state-of-the-art centers—one for infusions at Connecticut Children’s Farmington Campus at 10 Birdseye Road, and a new pediatric outpatient Dialysis Center at Connecticut Children’s main campus—they delivered generously.

“We realized how important it is to have child-friendly facilities for children who need infusion therapy and outpatient dialysis services,” Kristen said.

But the inspiration behind the family’s gift is a pediatric patient who has never undergone infusion therapy or dialysis, and may never need either service: their 14-year-old son, Nate.

Nate’s Journey

The Dalys, who have four children, including Luke, 18, Caleb, 16, and Maren, 10, have been frequent visitors to Connecticut Children’s over the years, primarily for Nate’s care.

“Nate was born with some kidney issues,” Matt said, “so, we have been involved with Connecticut Children’s Urology and Nephrology divisions since his birth.”

Nate was born with a birth defect called bilateral posterior urethral valves. “In utero, it caused significant damage to both of his kidneys,” Kristen explained. “The doctors removed one, and the remaining kidney is operating at a reduced function. He’s eventually going to need a transplant.”

“He gets tired and gets headaches, but he’s able to do whatever most 14-year-olds do,” Kristen said. “He’s a strong student, and he’s doing well overall.”

Now in the eighth grade, Nate excels in science, plays baseball, basketball and soccer and is taking guitar lessons. In between all of those activities, he goes in for checkups with Dr. Cynthia Silva, Division Head of Nephrology and Medical Director of Connecticut Children’s Center for Kidney and Bladder Disorders, every six to eight weeks.

“Nate is an extraordinary boy,” Dr. Silva said. “He has never complained or refused to take on new responsibilities, given his medical issues. He continues to be positive and is a team player on his sports teams as well as at home.”

Nate says Dr. Silva keeps him laughing, as does his father, who will be the donor when it comes time for him to undergo his kidney transplant. “He makes everything better by doing funny stuff,” Nate said. “He lightens the mood.”

The Need for New Centers

While Nate’s kidney transplant does not rely on Connecticut Children’s having new Infusion and Dialysis facilities in place, his family certainly sees value in supporting the new centers for children requiring outpatient dialysis—some while awaiting transplant—and for those who must undergo infusion therapy regularly for hours at a time, and some for the rest of their lives.

Each year, patients at Connecticut Children’s receive about 3,400 intravenous infusions for a range of illnesses, including inflammatory bowel disease, in a 363-square-foot space that was designed 22 years ago with 20 percent of the patient volume and today can no longer comfortably accommodate the growing needs of patients and their families.

“We’ve seen the space in its existing form and understand the need,” Matt said. “We also want to be supportive of Dr. Silva’s work at the hospital.”

“Creating a new pediatric outpatient dialysis center at Connecticut Children’s is monumental and actually prioritizes the unique needs of children on dialysis,” Dr. Silva said. “These needs include child-appropriate distraction techniques, Child Life services, pediatric-trained nurses and pediatric medical equipment,” she said.

Amazing Gems

The new, larger centers will offer private treatment bays and child-friendly surroundings for patients and their families, in addition to offering the first pediatric outpatient dialysis facility in the state, thus eliminating the need for families to travel to distant facilities for care geared toward children.

“We like the fact that we will have these amazing gems in our backyard, and families won’t have to travel to Boston or New York for pediatric outpatient dialysis services.” Kristen said.

“These are the kinds of facilities you don’t appreciate until you need them—and when you need them, you really appreciate having them,” Matt said.