Ellen loves basketball, camping, horseback riding, and dancing. But on August 1, 2019, she received a diagnosis that would turn her family’s world upside down.
Trish is Ellen's mom, but she's also a nurse, and she just knew something wasn't right with her daughter. After serious bouts of nausea and vomiting — and so many trips to the doctor — Ellen's lab work kept coming back normal, but her episodes continued.
On one particular doctor visit, the pediatrician heard something when listening to Ellen’s heart. That sound made him calmly (but firmly) tell the family to get Ellen to the Emergency Department at Nemours Children's Hospital, Delaware as soon as possible. A team at Nemours was ready and it wasn’t long before Ellen was admitted to the Cardiac Intensive Care Unit.
Ellen was in severe heart failure.
Ellen was diagnosed with dilated cardiomyopathy, a condition in which the heart muscle becomes weakened and enlarged and, as a result, it cannot pump enough blood to the rest of the body. Further testing revealed Ellen was born with a genetic mutation in her heart.
“We barely had time to process what was happening,” says Trish. “We learn in a matter of hours our daughter is in heart failure and needs a transplant. Then, just 19 days later, we learned there was a heart available.”
Ellen received her gift of life on August 20, 2019. The heart transplant was performed by Nemours Chief of Cardiothoracic Surgery Dr. Christian Pizarro.
The Hardest Night of Our Lives
But her story doesn’t end there. While the transplant was successful, Ellen was treated for rejection. On one of her follow up appointments, her Nemours cardiologist Dr. Carolina Prada-Ruiz felt it was important for Ellen to have another echocardiogram (echo), which is an ultrasound that tracks the heart’s movement. It revealed a large mass, “like a marshmallow,” on Ellen’s heart. She was diagnosed with a large atrial thrombus, which is a blood clot that develops and can obstruct or stop the flow of blood, or even possibly travel inside her body to cause a stroke.
“We knew what had to be done,” says Trish. “And we knew Ellen was in the best, safest possible hands.” In her second open-heart surgery in less than three months, Nemours cardiothoracic surgeon Dr. Glenn Pelletier removed the mass.
A Year of Recovery
As Ellen recuperated at home, the world went into lock-down. “In many ways it was a blessing,” explains Trish. “Ellen never wanted to be treated differently, didn’t want friends or teachers to feel badly for her. But now everyone had to wear a mask and be socially distant. She fit right in!”
But as the world opened back up, so too did Ellen’s. She has returned to school, to riding her horse, and to playing basketball with her friends. “She kept a photo of her basketball team in her hospital room,” Trish says. “It was such a source of comfort.”
But what Ellen most looks forward to is travelling. “She hopes to go on an island vacation someday,” says Trish, “and we can’t wait to take her there.”
Adds Trish, “We have been surrounded by miracles, blessings, compassion and support. From the amazing doctors and nurses to Child Life to the support staff…how can we ever thank all who took such wonderful care of our daughter? We have our funny, sarcastic, creative, and beautiful girl back, thanks to everyone at Nemours.”