April 02, 2024
When Molly and Anthony Ruane gave birth to Matilda, their joy quickly turned to terror.
Matilda wasn't breathing. Her lungs and kidneys hadn't developed properly. Hospital staff whisked her away to emergency care. They weren’t sure she would survive.
Unsure what would happen next, Molly and Anthony could only wait.
Two hard years later, Anthony donated a kidney to Matilda. Today, Matilda is thriving thanks to her mother's diligent care and her father's selfless gift.
This is their story.
Matilda’s Birth
Matilda was born with bilateral multicystic dysplastic kidneys. This is a rare and deadly form of multicystic dysplastic kidney (MCDK) that results in abnormal fetal development of both kidneys.
As a nurse practitioner, Molly understood how grave Matilda’s diagnosis was.
“Before Matilda’s birth, we knew she might need extra support breathing. She might have some kidney issues that would need to be resolved when she got older,” said Molly. “We did not expect severe kidney disease. In many cases, bilateral MCDK is fatal.”
Hope was not lost. With a ventilator and proper medications, Matilda’s lungs began to grow. Sadly, no treatment could fix her kidney damage.
"Matilda's kidneys failed soon after birth. She received peritoneal dialysis, where the blood is filtered inside the body instead of by a machine,” said Molly. “At six pounds, she was too small to handle an entire dialysis treatment at once. The healthcare team worked hard to find the right balance for her."
During that time, Molly and Anthony got a crash course on peritoneal dialysis and how to best care for their daughter.
"After 100 days on the ventilator, Matilda was stable enough to breathe on her own," Molly said. "A few weeks later, she was also large enough to handle a full dialysis treatment and come home.
Do you have a child with kidney disease? Join NKF’s Community for Parents of Children with Kidney Disease. This community allows you to safely and anonymously connect with others who have similar experiences.
Sleepless Nights
Once home, Molly resumed the role of Matilda’s mother, advocate, and dialysis nurse.
“I am so grateful for my healthcare background and that I had the means to stay home to care for my daughter,” said Molly. “Anthony was a tremendous help, but as a nurse practitioner, I felt I was the best person to do her dialysis. I understand how easily Matilda could get an infection and have the background to help ensure that didn’t happen.”
For the next two years, Molly endured sleepless nights to provide Matilda with the best care possible.
“Matilda received peritoneal dialysis every night for ten hours,” Molly said. “I’m so grateful we have the technology that kept my daughter alive but I hated that she had to be connected to a machine so many hours of the day.”
Care for Matilda didn’t stop there. Molly and Anthony were determined to give their baby the best childhood possible while they helped her grow big enough for a kidney transplant.
“We tried to give her as much normalcy as possible while helping her stay on track developmentally,” Molly said. “Babies who spend a long time in the NICU are more likely to have developmental delays. I advocated for her, ensuring she got the services she needed to hit her milestones.”
During the day, Molly juggled Matilda’s doctor’s appointments with speech and physical therapy. She used games from Matilda's therapists to improve her motor and feeding skills while having fun.
“We needed to get Matilda to 22 pounds so she could receive a kidney transplant. Anthony and I did everything within our power to get her there,” Molly said. “Soon after her 2nd birthday, the surgeon felt confident that Anthony's kidney would fit inside little Matilda. He’d been eager all along, waiting to help our baby girl feel better and give her this gift of life."
Want to learn more about donating a kidney? Sign up for NKF’s “Becoming a Living Donor” course. This free, online program teaches you everything you need to know about becoming a living donor.
A Life-Changing Transplant
As soon as the Ruanes got the go-ahead, Anthony began the process of becoming a living kidney donor.
“The first step was to ensure Anthony was fit for a transplant, and, then, he and Matilda underwent testing to confirm they were a match,” Molly said. "The surgery took place in June 2023. Everything went perfectly.”
The change in Matilda was immediate.
"She woke up full of energy and with an increased appetite," said Molly.
Anthony also recovered quickly with no complications. He’s living life the same as before but with more joy and hope.
“While Matilda will always need to take medications and have frequent check-ups, her future's so bright," Molly said. "She can now take a bath and swim. She can sleep through the night without hearing a machine beep. She's so happy and ready to explore the world."
Matilda couldn't do these things while on dialysis.
"Getting to this point was hard but so worth it. Matilda’s life changed the day she got a transplant," said Molly. "We can't wait to see what the future brings.”
Matilda got a second chance at life but not everyone is so lucky. Current policies often perpetuate inequalities in the transplant system. We're asking everyone to join the fight for a fairer future. Sign NKF's Equity Spotlight Petition to help ensure there is KIDNEY EQUITY FOR ALL™.
