With experience in cardiac and pediatric nursing, Josh and Lisa knew their Lilly was very sick even before she was born. As employees of Penn State Health, they had seen others go through this and they knew what they could be up against—it could be a very long road ahead. Without a second thought, they chose Penn State Children’s Hospital for Lilly’s life-saving care.
“At our 20-week ultrasound, we found out that our little baby girl ‘Lilly,’ still yet to be born, had a hole in her heart, or – clinically speaking – an AV canal defect,” says her mom, Lisa. “As expectant parents, it was so hard to hear that she had a heart defect and would likely need surgery soon after she was born. In addition to the anticipation of Lilly’s heart surgery, we also learned that this type of defect is common in babies with Down syndrome. It was a lot to take in at once,” Lisa says. “Not only would our little baby need heart surgery, there was this unknown element of wondering if she would have special needs all her life. The uncertainty we faced throughout the second half of my pregnancy was very challenging, but it wouldn’t last forever. I was induced at 37 weeks – I heard her little cry and there she was. Our Lilly had arrived and I was thrilled to meet her! One uncertainty was soon confirmed – Lilly does have Down syndrome. And, next? It got pretty serious pretty quickly.”
Second heart defect identified
Upon Lilly’s birth, doctors discovered a second heart problem, coarctation of the aorta—a severe narrowing of the aorta—making it difficult for blood to flow through her aorta to the rest of her body.
“Lilly was absolutely beautiful. She was a sweet little baby. We knew she had Down syndrome—that didn’t matter to us,” Josh says. “The morning after she was born, we walked into the neonatal intensive care unit (NICU) and saw Lilly’s pediatric cardiologist, Stephen Cyran, MD. He said she was stable, but that they had identified a second heart defect. This one was a coarctation of the aorta and it needed to be repaired right away. Lilly very quickly went from being just another baby in the NICU to being the sickest baby in the NICU.”
“After hearing from Dr. Cyran, we headed over to Lilly’s bedside. As we got to her, the doctors and nurses were doing their change-of-shift report. As a nurse, I remembered hearing reports like this and I thought, ‘This is a long report. This is not good,’” Lisa says. Thankfully, we were surrounded by family—our immediate family was there to support us as new parents going through this and our “work family” was caring for our new little baby girl who was very, very sick. In fact, the nurse who cared for Lilly the night before her heart surgery went to nursing school with me. And then there was her heart surgeon—Jack Myers, MD. We knew that Dr. Myers was a very well-known pediatric heart surgeon – considered the best of the best – and he was going to operate on our Lilly. To say it was a difficult day would be an understatement, but having all of the trust in the world in these caregivers made it somewhat easier.”
Just four days after birth, Lilly underwent repair of her coarctation of the aorta.
“I remember getting to Lilly’s room after her first heart surgery. There was this huge sign that said, ‘Welcome baby Lilly.’ There were all these people there ready to take care of her,” Josh says. “That was a huge moment. We were just surrounded by love and care from all these people who were not only rooting for us, but this amazing team of individuals are the leaders in caring for babies just like Lilly each and every day. It was really a hard time, but we knew we were not alone. Our Lilly was in the best of hands! That was pretty great.”
Lilly’s first identified heart defect—the AV canal defect was surgically repaired several months after she was born. Now 7 years old, Lilly is a first-grader coming into her own and enjoying being a big sister to Julia, age 5.
“Dr. Cyran says her heart is basically a normally functioning heart. You would never know it was repaired other than the scars. It’s amazing because we didn’t even know if we would be able to bring her home from the hospital,” Lisa says. “She overcame many challenges so early in her life. She is full of life and joy and truly appreciates each and every day. As a 7-year-old, Lilly is an amazing child and has an extraordinary sense of care and compassion for others—family, friends, neighbors, her pet guinea pig, Scone and even people she’s never met! She cares so much for others that, unprompted from either of us, if she hears of someone who is sick or not well, she will stop what she is doing to say a brief prayer of well wishes. She also loves celebrations and music! All this adds up to one girl who absolutely loves birthdays and singing Happy Birthday. Whether it is her birthday or someone else’s, she truly enjoys and appreciates celebrating life and bringing joy to others!”
“Lilly and her younger sister, Julia, are quite a pair—they watch out for each other, take care of one another and love to play music together. Lilly adjusted so well to being a big sister – she had the perfect caring personality and we are so lucky to have two beautiful daughters,” says Josh.
When Lilly was born, she had very serious congenital heart defects. Now those defects have been repaired and her heart is filled with so much love, compassion and joy. Everywhere she goes; she makes people laugh and smile and takes time to enjoy even the smallest celebrations.