When Michelle Eddelman gave birth to her daughter, Emily, doctors said there was only a 50 percent chance the infant would survive.
Emily had been born three months early, weighing less than two pounds and measuring only 12 inches long. But the tiny girl was a fighter, and after four months in the newborn intensive care unit at their local hospital, Emily was finally able to go home.
Things went well at first, but when the baby was 9 months old her condition took a frightening turn.
“She began having these episodes that revolved around her sleep,” says Michelle. “It almost seemed like she was having seizures.”
Their family doctor didn’t know what to make of it. A neurologist couldn’t come to any conclusions, and sleep studies revealed nothing about Emily’s condition. Over just a few months, she had 12 of these scary episodes.
At 14 months old, a case of pneumonia landed Emily back in the hospital. A chest X-ray finally revealed something that no one else had seen: she had an enlarged heart. A cardiologist found that this was caused by high blood pressure in the artery connecting her heart and lungs, a condition called pulmonary hypertension.
Bilateral lung transplant — Emily's best option
For years, Emily was given every drug that could possibly treat her condition. Doctors hoped that as she grew, her underdeveloped lungs would grow stronger and the pulmonary hypertension would resolve itself. But Emily wasn’t getting any better.
“During the summer of 2012, her cardiologist back at home told me that her heart was the worst he’d seen,” says Michelle. “That’s when he first recommended a bilateral lung transplant.
"I asked the question that any mother would ask. ‘If I don’t do this, what could happen?’" Michelle recalls. "He told me she might only live for another two years without a transplant. He was scared that she’d be running around on the playground one day, and that would be it."
Emily, then 5 years old, was referred to The Children’s Hospital of Philadelphia (CHOP), where she was evaluated by cardiologist Brian Hanna, MDCM, PhD, who found Emily was eligible for a lung transplant.
Lung transplantation is relatively rare compared to other organs. In 2011 (the most recent data available) surgeons transplanted more than 11,043 kidneys that came from deceased donors. That same year, only 1,821 patients received new lungs from a deceased donor. The number of pediatric lung transplants is even smaller.
The Lung Transplant Program at The Children’s Hospital of Philadelphia is known both for its excellence and for its comprehensive approach to care. The lung transplant team has performed more than 69 lung transplants, with outcomes among the best in the world.
Preparing for surgery
In October 2012, Michelle moved her family from North Carolina to Pennsylvania so they would be within a few hours’ drive of CHOP when the time came for surgery. Emily was put on the United Network for Organ Sharing (UNOS) waiting list the following month.
On Feb. 27, 2013, they got the call they’d been waiting for: there were lungs available that looked like a match. Emily was transplanted the following day, and after two weeks of recovery, she was able to leave the Hospital.
For two more weeks, Emily and Michelle lived at the Gift of Life Family House in Philadelphia during the week, making it much easier to get to follow-up appointments and physical therapy. The Gift of Life Family House is a housing option for CHOP transplant patients and their families.
Then and now
“Emily used to get so tired. She couldn’t walk very far and I’d have to carry her. She was very restricted in what she could do,” says Michelle. “Now she has so much energy, I can barely keep up with her. She’s just soaring.
"We’re counting down the days to summertime so she can go to the park and roll in the waves at the beach and try out her new Tinker Bell rollerskates.”
Michelle is especially grateful for the team that cared for Emily at CHOP.
“Everyone was so helpful. I love the transplant team: Dr. Kreindler, Dr. Goldfarb and the whole nursing staff. They explained everything to us and answered any question I ever had, right down to the smallest detail.”
The way Emily races around the room and strikes up a conversation with anyone who will listen, you’d never know she had major surgery just weeks before. In case you forget what she’s been through, Emily’s happy to show off the scar that runs across her chest.
The Eddelman family will stay at their home in Bushkill, PA, for several more months while Emily continues her recovery, but they’re hoping to return to their lives in North Carolina by Christmas. She just can’t wait to get home to play with her dog, her sister and her Barbies, and be a healthy 5-year-old girl.
“I’m really looking forward to writing a letter to the family of her donor as soon as we’re allowed to,” says Michelle. “We always told Emily that her angel would give her lungs. I’d really love to know her angel’s name.”
Originally posted: April 2013