Lucy Reflects

“If You Find it in Your Heart to Care for Somebody Else, You Will Have Succeeded.” -Maya Angelou

I never wanted to work in pediatrics and it wasn’t my goal when becoming a respiratory therapist. When I was first floated to the Children’s Hospital, I was leery and scared, but the more time I spent there, the more comfortable I became. Suddenly, I was training in PICU and I loved it. I enjoyed interacting with families and seeing the kids get better. Then I became a mom and could see myself in the mom struggling to keep it together at the bedside. I have cried, laughed, and celebrated successes with families.

One day when I was working in the PICU, a co-worker called me and told me to come to a room where there were twin boys. For those of you who don’t know me, I have a serious soft spot for twins, especially boys. One of the twins, “Baby B,” was in after his first open-heart surgery. The other, “Baby A,” was in for snuggles from staff, which I was more than happy to provide. I reminisced with the twin’s mom, JJ, about how having twins is amazing and how truly awesome twin moms are. “Baby B” was in for an extended stay, so I got to know his parents well, popping in to say hello every time I worked. Fast forward to “Baby B” going home after many weeks. JJ and I said our good byes and I followed her photography Facebook page and we became friends.

Over the next few months, JJ and I saw each other through photography events. JJ is a giving person by nature and talked to me about starting a non-profit to benefit kids with congenital heart defects (CHD for short). I loved the idea and told her I was on board. After a whirl wind couple of weeks and an exciting first board meeting, I somehow roped in a few friends, like Lucy, to help us hit the ground running.

This is JJ’s story about her beautiful heart warrior, Levi, and how the foundation came to be. We are so excited for this journey and are honored to be part of Pediatric Congenital Heart Association- Pennsylvania. To see how you can help, visit conqueringchd.org.

We first found out we were expecting twins at six weeks pregnant after a suspected miscarriage. The first ultrasound showed two gestational sacs but only one baby. I was told I was probably miscarrying the "empty" sac, would likely lose the baby, and to return in a week. But at the next ultrasound, the tech turned the monitor to us and said, "Here is Baby A with a heartbeat, and here is Baby B with a heartbeat!" We were beyond thrilled. I have ALWAYS wanted twins. Having twins automatically classified me as a high-risk pregnancy, so I was referred to Maternal Fetal Medicine, where I had in-depth ultrasounds every four weeks. At our 17-week ultrasound, we learned we were having boys! We already had two girls, so this was the perfect balance to our family. But the rest of the ultrasound did not go as planned. The MFM doctor came in at the end to take more scans and said, "I think there's something wrong with Baby B's heart. I can't give you a diagnosis, but I want you to come back for an echo cardiogram with a cardiologist."

I always tried to be so healthy during pregnancy. In the week leading up to the ultrasound there were so many well-meaning family members and friends telling me about wrong diagnosis, and how ultrasounds aren't always accurate. I found it hard to believe that anything could be wrong with our baby.

I was so wrong. I think that made the news even worse. We sat in silence listening to the cardiologist talk about our son's condition. I tried to think of questions to ask. It was all versions of the same one, "Will he live?"

Our son, Levi, was diagnosed with a complete Atrioventricular Septal Defect, which alone wouldn't have been as bad, but he had this little variant that completely changed the surgeries he would need to survive. He had one common valve, which is normal with this defect, but it was unbalanced, and more blood was getting to his right ventricle than his left. To simplify things and because of the surgery path he would take, we were now calling his defect Hypoplastic Left Heart Syndrome or HLHS. HLHS is one of the most severe heart defects. Your heart was designed to have two pumping chambers and his only has one. If left untreated, he would die within hours to days of being born, unable to get oxygenated blood to his body.

We were given three options: to have a series of three open-heart surgeries to reroute plumbing and make his heart able to pump with one ventricle; to have a heart transplant (which is not recommended unless the surgeries are not a good option for your child); or to offer comfort care as nature took its course and provide comfort while we watched him die. Option three was out. We personally feel that God's job is to give life and ours is to preserve it. So we chose the three surgeries.

The Norwood would be the first. This took place when Levi was one- week old. The second surgery, the Glenn, took place when Levi was three-and- a-half months old. He will have his Fontan in about two years when he is three-years old.

There are no words to explain what it’s like to send your one-week old son for open-heart surgery. Or what it's like to see your child intubated and not moving and not hear them cry because there’s a tube down their throat. Congenital Heart Defects aren't pretty. Those scars were earned at a great price.

When we call them heart warriors, we mean it with every fiber of our being. Levi is NOT FIXED. He is NOT CURED. He will never be normal. The heart wasn’t designed to pump the way his is pumping. His other organs weren’t designed to have blood pumped to them the way his heart is.

At some point, his heart and liver are going to wear out. Will it be in five or 30 years? We have NO IDEA. Imagine living each day, wondering when your child's heart is going to fail or wondering if your child has a chance to outlive you.

We started the Pediatric Congenital Heart Association-Pennsylvania (PCHA) because we DO KNOW how it feels. We know that this isn't just a chapter in someone's life, but a part of every page of their story. We need people to support us, to fight with us and for us when we feel like we can't anymore. We are raising awareness to support research and medical advancement, because our Levi's life and the lives of so many depend on it to survive. Our hope is that our son outlives us, and there is a cure.

One of our main purposes is to provide care packages to families at Penn State Hershey Children's Hospital. From the time they get their diagnosis, from infants to adults that are living with CHD, to help take some of the sting out of their diagnosis, and all points in between. They need them to know they're not alone and together we can conquer CHD.

The End … or the beginning, if you know what I mean.