In early December, 14-year-old Nilian underwent a kidney transplant at Hartford Hospital. The surgery went well, the recovery even better, and the story behind Nilian’s adoptive family and her journey from a dire situation to new hope and possibilities is as inspiring as her medical transformation.
It has been a team effort that includes the state Department of Children and Families (DCF), NAFI Connecticut, and, mostly importantly, her adoptive parents, Terri and David.
“We have a lot of great foster parents, but it’s not often you find a family in this position where they can take on all of this,” said Katie Pronovost, a Family Worker in NAFI’s Professional Parent Program who works directly with Terri’s family to provide therapeutic foster care support services for Nilian.
“I think they’re pretty amazing. I think we need more of them,” Elizabeth Sitler, Director of Foster Care Services for NAFI CT, added of the family, which, inspired and sustained by their faith, has been taking in and adopting children with medically complex situations—even those not expected to survive—for more than two decades.
“We really feel we are doing what we are made to do,” Terri said. “This was what God intended us to be doing.”
Before Nilian entered their life in July 2019, her living situation and medical prognosis were worsening.
With her biological parents no longer in the U.S., Nilian was under DCF custody and she and her two younger brothers were living with a foster family.
In January 2019, Nilian was hospitalized at Connecticut Children’s Medical Center and diagnosed with end stage renal failure and Goodpasture syndrome. That medical status would mean making frequent trips from the Hartford area to New Haven for dialysis, as well as weekly appointments, and visits with specialists.
Nilian was deemed to be fatally ill if she couldn’t get a kidney transplant, and youth in foster care are not eligible for transplants unless they are placed with a permanent and stable family.
For a youth in Nilian’s position, qualifying for a transplant meant finding the foster family equivalent of a unicorn—a family both able to handle children with complex medical needs and committed to caring for that child going forward.
Enter Terri and David, through a bit of providence.
The foster care agency liaison who had worked with the previous foster family asked for prayers for Nilian at her church. Someone in the church network who knew Terri suggested she and David might be a good fit. The foster care agency staff member then brought the recommendation to DCF.
Terri and David are uniquely equipped to handle young people like Nilian. They provide care full-time and also have adult biological children who come to their home every day to lend a hand, which meant they could take Nilian to her dialysis appointments, or spend nights with her in the hospital as necessary, knowing their other children with complex needs were well cared for.
In addition to dialysis, when Nilian joined the family in the summer of 2019, she faced other complications. Her blood pressure was “through the roof,” her potassium levels were a concern, and she had secondary illnesses.
And there was something else, too.
Terri said the family initially had hesitated with Nilian because the picture was further complicated by her autism.
Ultimately, the against-the-odds nature of Nilian’s battle only made Terri and David want her more. “They were adamant with DCF that they wanted to adopt her, no matter her lifespan, and be part of her world,” Liz recalled.
Once Nilian was in their home, they were able to begin managing the complications and stabilize her condition.
“She got to a place where her disease leveled out to the levels that would make her eligible for transplant,” Liz said. Nilian was approved to join the transplant list, underwent the necessary testing, and was placed on the active list in fall 2020.
Toward the end of November, they got the call that more testing was necessary because they had a potential donor match, and on Dec. 3 Nilian received the live donor transplant.
She left the hospital after only a week, her recovery has been smooth, and her transformation is almost remarkable.
“The wonderful benefit of the transplant is we have really seen her blossom back into her personality,” Katie said. “She’s a wonderful, funny kid and now she can go back to being a kid.”
Nilian loves comic books and drawing, and even her drawings have been liberated by the transplant’s salutary effect on her health.
“She’s a transformed kid because she feels good,” Terri said, mentioning how Nilian’s playfulness, creativeness and interaction are flourishing. “Now she comes and hangs out with us all the time, which is not the norm for autistic kids. She’s blossomed into this child who wants to be with people, and wants to play with her siblings and be silly. She wants to be creative and she wants to learn.”
Nilian is the sixth adoption for Terri and David, whose journey began with foster care placements that were eventually eclipsed by a commitment to welcoming, and adopting, children and young adults with complex medical needs.
“The more medically complex children we got, the fewer placements we did,” Terri recalled.
One of their medically complex adopted children passed away, and the couple also lost a biological child.
About a month after one of the couple’s sons passed away, Terri and David received a call from a pulmonologist asking them to come and see Ashley, whom they had learned about while in the hospital with their son who passed away.
The doctors had performed a tracheotomy, Ashely was on a ventilator, and “her prognosis was they were sending her home to pass away,” Terri said.
Ashley was 2 at the time, and the physicians wanted the couple to take her into their home. “My daughters very quickly said, ‘This is what we do,’” Terri remembered.
Ashley was the couple’s fifth adoption. She’s now 12, off her ventilator during the day and walking, talking, and eating.
“I can’t imagine doing anything else or having any other lifestyle,” Terri said. “Our only wish is to have more kids.”
NAFI is also working with a 14-year-old boy in another placement who recently underwent a kidney transplant and is doing well after some initial challenges.
“So we’ve had another miracle,” Liz said, explaining that young people facing many types of very serious conditions and issues are living in foster homes. “It’s hard to find families like this one that are going to be able to do all that’s involved.”
Become a NAFI CT Foster Family!
Foster families come in many forms, including relatives of children, single foster parents, and LGBTQ+ individuals and couples. Contact our foster care specialists at (860) 560-7324 or email Liz Sitler at LizSitler@nafi.com to find out how you can help a child find a forever family.