Hearing that there’s a problem with your child’s heart can feel like a punch to the gut – and to the heart too. With the knowledge and compassion to care for kids with even the rarest heart conditions, the experts at our Children’s Hospital Foundation Heart Center are leaders in mending little hearts and sparing big ones.
This month, we’re celebrating all of our heart heroes. Here’s a glimpse into the lives of four of these warrior families.
Shailyn Johnson, age 9
Shay has MPS VI, a complex condition, in addition to having aortic and mitral valve insufficiency - which means that her heart doesn’t pump efficiently. We’re stabilizing this hero’s heart so she doesn’t need surgery.
“Shay is a bright-spirited, intelligent, polite and positive little girl. She has a wonderful sense of humor and inspires me to persevere every day. She is full of laughter and happiness in spite of her diagnoses.” – Shay’s Mom
“Without the multidisciplinary care that is offered at CHoR, it is possible that Shay’s heart could have been damaged to the point of needing a transplant.” – Dr. Kerri Carter
Nora Grace Marino, age 4 months
Nora was diagnosed with three heart defects: VSD, ASD and aortic arch hypoplasia. Her heart had to work harder to supply the lower half of the body with blood and she needed open-heart surgery to mend her heart after she was born.
“When I was 21 weeks pregnant, we found out that Nora had something wrong with her heart. That very same day our hearts broke too. As the weeks passed, I had countless fetal echoes, but Nora's VSD and ASD did not change in size. So we patiently waited for her arrival.
When she was born, Dr. McQuilkin performed an echo on Nora to confirm her diagnosis. Nora was sent to the NICU to make sure the aorta didn't close. Two LONG days later, Nora was allowed to go home. Dr. McQuilkin called me every other day to check on Nora.
Week-by-week we saw him. At 6 weeks old, Dr. McQuilkin said ‘it's time.’
Our heart surgeon, Dr. Yeh, made us so calm and optimistic. He said, ‘I’ll treat her like my own, I’ll take good care of her.’ And he did. Seven hours later as we stood in the hall awaiting their arrival to PICU we saw Dr. Yeh and his team with baby Nora in the middle. I've never seen someone smile so big. Dr. Yeh fixed Nora's broken heart and for that we will be forever grateful. Nora is doing great.” – Nora’s Mom
Teriah Scott, age 16
In early 2013, Teriah was diagnosed with osteosarcoma in her right leg and in April her leg had to be amputated. The chemo that treated her cancer ultimately damaged her heart. She had her first heart transplant on December 13, 2013.
In July 2019, Teriah got a virus. The treatment was very complicated and her heart function began to decline. Then Teriah's kidneys began to fail and she went on dialysis; her heart worsened to the point that she had to be put on the heart transplant list again. On September 3, 2019, Teriah received her second heart transplant.
Today, Teriah is doing much better - she is off dialysis and enjoying life as a junior in high school.
“We want to thank the amazing doctors, nurses, teachers, child life specialists and music therapy staff at CHoR. You guys were our rainbow during those hard times. To many Teriah is known as the 16-year-old who had three hearts, but to our family she's our miracle!” – Teriah’s Mom
Rose Taylor, age 7 months
Our team often diagnoses broken hearts before a baby is even born. While her mom was pregnant, Rose was diagnosed with transposition of the great arteries, meaning the two main arteries leaving her heart were reversed. Rose’s mom was initially seen by another cardiology practice and told she’d have to leave Richmond for Rose’s surgery. She sought a second opinion and found hope close to home at CHoR.
Our team worked with Rose’s family to develop a plan for a safe delivery and open-heart surgery.
“As the parent, all of this information was a lot to take in and understand. When she was born and I heard her beautiful cry, I completely forgot that she wasn’t a healthy baby. The NICU, PICU, Dr. Yeh, Dr. Hunter (resident), Dr. Rosenthal and many more people went above and beyond to make sure that I was comfortable and understood everything that was going on. I was even able to stand in during the morning rounds in the NICU and PICU while the doctors discussed what was going on and the decisions they were going to make.
Today Rose is 7 months old. She can stand, roll over, babble and laugh. She’s working on sitting up on her own and hopefully soon she will show interest in crawling. Her progress overall has been phenomenal.” – Rose’s Mom
Dr. Jin Lee speaks with CBS6 about expert heart care close to home and introduces us to little Bristol, another CHoR heart hero.