Tetyana Dudka learned she was pregnant with her daughter, Nadia, just three weeks after she and her husband got married. Both 35 years old at the time, the Ukrainian couple was ecstatic to become parents so quickly. The couple had planned to move to the U.S. for their jobs in the coming months, but with a baby arriving soon, they put the move on hold.
When Nadia was born nine months later in December 2012, the bright-blue-eyed little girl became her parents’ whole world. At three months old, Tetyana noticed Nadia was rapidly losing weight. The family spent two weeks in a Ukrainian hospital searching for answers, but nothing made sense. Her digestive system looked healthy. Her heart, they eventually uncovered, was not. The doctors thought Nadia had a rare form of cardiomyopathy, but they had no treatment plan to offer.
“The doctors said there was nothing they could do. They told us to just take her home and enjoy the days we had left with her,” recalls Tetyana.
Just as Nadia’s condition worsened, Tetyana and her husband’s jobs moved them to Washington, D.C. They scheduled an appointment with Children’s National immediately, where doctors confirmed her diagnosis as restrictive cardiomyopathy.
Restrictive cardiomyopathy is a rare heart condition in which the heart muscles are too stiff and can’t relax to fill and pump the correct amount of blood to other parts of the body. For Nadia, this not only meant that her intestine function was compromised, causing nausea and vomiting, but her lungs also had to work in overdrive. The only option to treat restrictive cardiomyopathy is with a heart transplant – something not available in Ukraine.
“It was my first week at Children’s,” remembers Janet Scheel, M.D., Director, Advanced Cardiac Therapies and Heart Transplant Program at Children’s National. “Nadia’s family came to see me on my first Friday on the job, and I admitted her immediately.
She had severe failure to thrive, recalls Dr. Scheel. At nine months old, she weighed only 12 pounds – the average size of a two month old. She didn’t even qualify for the transplant list because she was too underweight. To prepare her for transplant, the team worked to help Nadia gain weight through the help of a percutaneous gastrostomy tube (G-tube), which enables certain nutrition and medication to enter the stomach directly. They also gave her medications to reduce the extra fluid on her lungs and oxygen to ease her breathing issues.
Two months later, in December 2013, Nadia had finally gained enough weight to be placed on the transplant list. On April 26, 2014 at 11 p.m., Dr. Scheel made the call the family had been waiting for. Eight minutes after midnight on April 28, Nadia got her new heart.
“Immediately after surgery, Nadia started to be really hungry all of the time. For several months, in nearly every photo we have of her, she’s holding food,” Tetyana laughs.
Soon, it will be three years post-surgery. Nadia loves her Pre-K3 class at Maury Elementary, and she enjoys taking piano and ballet lessons.
“Children’s National is amazing,” says Tetyana. “From the doctors to the janitors, everyone who touched our lives was so nice, positive and sincerely caring, and we will be forever in their debt. Dr. Scheel gave us hope and developed our medical care plans, top-notch doctors cared for Nadia pre- and post-transplant, and the care team anticipated any issues that could occur, explained them and answered all of our questions along the way.”
Today, Nadia is only seen on routine visits, but the family remains close to their Children’s family. “Our transplant cardiology nurse practitioner, Carol Hartman, provided us with significant guidance and assistance during difficult times, and it’s great to know that she is only one call away. Laura Norris was our nurse on the Heart and Kidney Unit, and she cared for Nadia right after the surgery. She was the nicest, gentlest nurse we’ve ever met. She was always willing to go above and beyond. We are so blessed to have her on the cardiac Transplant Program team now.”