Niyear Perez no longer needs dialysis to live, but he knows what a new pediatric outpatient dialysis center means for kids who do. The 16-year-old Waterbury resident had experienced firsthand the challenges of traveling back and forth to adult dialysis centers before undergoing a kidney transplant on June 5, 2017. The new outpatient dialysis center will be coming soon to Connecticut Children’s.
Niyear, a patient of Cynthia Silva, MD, Division Head of Nephrology, and his grandmother, Virginia Robinson, were special guests at the groundbreaking ceremony of the new Robert R. Rosenheim Foundation Dialysis Center on August 13. Once completed, the new facility, located on the fourth floor of the medical center at 282 Washington Street in Hartford, will be the only outpatient dialysis center in the state geared toward children.
“I am so proud of Dr. Silva,” Virginia said. “She sees what these children go through—and she really cares. For her to make this center come to life with the help of donors is wonderful. I’m so happy about that, because it is rough on children to have to sit in adult centers with adults undergoing dialysis.”
Niyear’s Dialysis Journey
For Niyear, who is in his sophomore year this fall at Wilby High School, the need for dialysis was as unexpected as it was frightening. It all started with severe headaches in 2015 when he was in the sixth grade.
“He kept complaining of bad headaches, and then his blood pressure went through the roof,” Virginia explained. He was referred from their local hospital to Connecticut Children’s, where Dr. Silva diagnosed him with chronic renal failure. “Dr. Silva diagnosed him and immediately took action. She made a decision to remove both his kidneys and that ultimately saved his life.”
Niyear remained in the intensive care unit at Connecticut Children’s for several months and began dialysis in 2016.
“Niyear’s case was difficult because he and his family didn’t realize how little kidney function he had because of his disease,” Dr. Silva explained. “He was very ill when we met him, so he went on dialysis rather quickly for a young teenager. It was hard for him and his family, so having him dialyzed at an adult unit made it even more difficult.”
Virginia, who is Niyear’s guardian, said they first drove to an adult dialysis center in South Windsor, where he underwent dialysis three times a week, for 3-4 hours at a time. He was then transferred to an adult facility in North Haven, where he also went three times a week, 3-4 hours at a time. “It was a rough experience for him, but we had to do what we had to do,” Virginia said. “Then, Dr. Silva suggested we try home dialysis. So, I got trained to do home dialysis and we did home dialysis overnight.”
“It was easier to do it at home, but I couldn’t do a lot of things at night,” said Niyear, who was home-schooled at the time. He was on overnight home dialysis for the next three months.
All of that changed for Niyear when his family found a kidney donor in May 2017. “Actually, it was his art teacher from elementary school who donated one of her kidneys,” Virginia explained. Niyear had been a student at the school for four years, and when an article ran in the local paper, his former teacher came forward to help. “She said she had to do something—and we are grateful,” Virginia said.
Although it took time for him to recover, Niyear—who has two younger brothers and a younger sister—said he feels good today and is looking forward to the future. “I want to go into the NBA or become a therapist,” he said.
New Pediatric Dialysis Center
When it opens, the Robert R. Rosenheim Foundation Dialysis Center at Connecticut Children’s will benefit children throughout the region who will no longer have to travel to adult facilities across the state or travel out of state to pediatric dialysis centers.
The new center, which is currently under construction, is made possible, in part, by a $1.5 million gift from the Robert R. Rosenheim Foundation. The new facility will have a spa-like feel that will both calm and engage the senses of children who rely on dialysis to survive. It will also feature private treatment rooms large enough for a family, an isolation treatment room for patients who require it and a room where parents can learn how to administer at-home dialysis.
“The sheer nature of dialysis is traumatic to patients, so to create a dialysis experience that is actually soothing is an amazing achievement,” Dr. Silva said.
Importantly, it will be a facility where pediatric patients who require dialysis to live will be treated by medical professionals who are experts in the unique needs of children. The center is expected to be completed in February 2020.
“I think it’s a great source of pride for our organization to be making this commitment,” Dr. Silva said. “I’m truly excited that the patients are getting this opportunity and for my staff to have access to a pediatric dialysis center. They work so hard and tirelessly to meet the needs of children and their families. It is very meaningful for everybody all around.”
If you would like to support the new pediatric outpatient Dialysis Center at Connecticut Children’s, click here to make a gift.