My great-niece Payton Marie was born November 13, 2011. She weighed 5 pounds 2 ounces - a tiny miracle! She seemed like a perfect healthy baby girl. During her one-week check-up with her pediatrician, her doctor heard a heart murmur and referred her to the experts at Nationwide Children's Hospital. She had her first visit with the cardiologists for a screening to check out her little heart. Dr. Philip Thrush found that she had a hole in her heart (ASD) and she would require surgery to patch it (VSD). They anticipated the surgery would be performed when she was around 6 months old. She was put on some medicine to see if it would help her.
She went in for a check-up a month later and it was discovered that she had developed congenital pulmonary valve stenosis. This diagnosis moved her surgery requirement to as soon as possible. The surgery consisted of ASD - primary closure, VSD- repair patch and vulvuloplasty, pulmonic. Payton’s surgery was a success and she was going to be in the hospital for 5 days. The evening of her surgery, Payton went into cardiac arrest. Dr. Patrick McConnell had to perform emergency bedside surgery. Payton was placed on ECMO. The next day Payton had an EEG to test her brainwaves to check for any neurological issues that could have developed. Thankfully, there were no clear problems detected.
Every day she continued to get stronger and stronger. She beat an infection and was moved out of the bay area and into a room. She wouldn’t eat her bottles, so she had more testing. She had to get a G-J tube and then the J tube would be removed in a week after she had time to heal. She had the G tube for around 6 months. She never needed to use it. She ate her bottles on her own after she went home. Payton’s stayed 45 days at Nationwide Children’s. It was the scariest time of our lives.
Payton is now 2 years old and fearless. She is the sweetest, bravest, most beautiful person I know. I never thought a tiny baby could teach me so much about life, but she sure did and continues to every day! If it wasn't for Nationwide Children's Hospital and the amazing medical staff, I wouldn't have seen my precious niece accomplish any life milestones.
We first learned of Avery’s heart condition at our 20-week ultrasound. Avery had her first of three open heart surgeries, the Hybrid, when she was just 3 days old. After a few steps backward, we finally got to go home as a family after a month-long hospital stay. We spent the next 3 weeks bonding as a family of four and Avery found her best friend in life, her sister, Ellery. At two months old, Avery was unexpectedly readmitted to the hospital to have a stent placed in her retrograde aortic arch. Over the next couple weeks, we watched as Avery continued to prove her strength and meet milestone after milestone.
At the age of four months, Avery had the second of her three surgeries, the Comprehensive Stage II Surgery. She did very well with this surgery and returned home after 11 days, just in time to enjoy Christmas and the New Year! At eight months old, Avery needed to have her pulmonary arteries ballooned in the cath lab due to their small size. Once again, Avery did very well with this procedure. At 10 months old, Avery needed a stent placed in her aortic arch. In January 2014, Avery went back to the cath lab for her pre-Fontan Cath.
As of January 2014, it had been almost two years since Avery had to endure any cardiac procedures. Avery is approaching her third planned surgery, the Fontan. Instead of using Bovine or Gore-Tex material to make the final connection between her inferior vena cava and pulmonary artery, the team will extract bone marrow from her hip the morning of her surgery and use the cells, along with a degradable scaffold, to grow her own vessel which will be used to make the final connection that is needed. This will not “fix” her heart; it just takes the working parts and uses them in the best way possible.
Between now and her Fontan procedure, we look forward to being greeted by Avery’s bright eyes, infectious smile and bubbly personality. She has taught us to love and persevere like we never knew possible. She may only have a half a heart, but she has a personality that is larger-than-life to make up for it.
Kennedy was born with transposition of the great arteries and VSD. She had her first open heart surgery at 6 weeks of age. The surgery went fine but somewhere along the way, she was sleeping longer than a baby should and not eating well. She had an occlusion of the left coronary artery.
She received her first heart transplant at 7 months in 2002. She was in and out of the hospital with various degrees of difficulty. She subsequently contracted PTLD and went into heart failure. She received her second transplant in 2007 at 5 years of age. She received this heart well. She contracted PTLD in 2010 and underwent chemotherapy. To this day, her heart function is good and the lymphoma has been kept at bay. She is 12 now and she continues to amaze me. When I'm having a bad day, I pull my strength from her.
When Alex was born we had no idea that the name Alexander would be so appropriately suited for him. It translates to "man's defender, warrior." That is literally how Alexander started his life, defending his own life ... a brave Heart Warrior. With TGA, the "great" arteries are reversed in their origin from the heart - with the aorta connected to the right ventricle, and the pulmonary artery connected to the left ventricle - exactly the opposite of the normal heart's anatomy.
Approximately 30 minutes after his birth, Alexander was transported from Riverside Hospital to Nationwide Children's Hospital where he was admitted to the NICU. He underwent a procedure prior to his open heart surgery called balloon artrial septostomy, performed by Dr. John P. Cheatham. This is where a balloon at the end of a catheter is used to enlarge the opening between the atria. This helps blood mix between the two ventricles, while waiting for surgical repair, which usually takes place a few days later.
On June 6, 2005, Alexander underwent open heart surgery to repair his arteries. While we expected a 6-8 hour surgery, Alex's surgeon Dr. Mark E. Galantowicz and his team, performed the surgery in 4 hours. Dr. Galantowicz's first words to us after the surgery were, "Alexander the Great, did Great." As a mother and a father, there are no greater words we could have heard at that moment in time. Alexander had an amazing team of doctors and nurses, who took exceptional care of him. We will forever be grateful to Dr. Galantowicz and his staff. Today, Alexander is a thriving 8-year-old, who enjoys break dancing, basketball, boating and spending time with his family.
Avery Lynn was born with tricuspid atresia, absent pulmonary valve and hypoplastic right ventricle. Basically, Avery's right part of the heart is inactive. A week after being born, she had her first open heart surgery that allowed the left side to do the job of the right and the left heart chambers. We are blessed to have overcome obstacles such as cardiac arrest, belly and liver issues and feeding problems. Her fight is not over as she will have the Glenn and Fontan surgery in the future, but with prayer and support this little girl can overcome anything.
As unorthodox as it may seem, we want to share our story of The Heart Center's part in giving our child life, us joy, and allowing our family to become complete, even if it was for a short time. Our daughter, Abigail Grace, was diagnosed prenatally with HLHS (she was missing the left side of her heart, among other abnormalities) by a Heart Center doctor. Had Abigail not had intervention immediately after birth in October, her chance of survival was 0%. Our newborn was transported to Nationwide Children's Hospital where she received a minimally invasive procedure at just 3 days old. Had Abigail been transported to any other children’s hospital in the world, there is a very high probability that she would have had been put on heart and lung bypass and received a complicated open heart surgery as a fragile newborn. Because Abigail’s heart was so much worse than a typical child with HLHS, she probably would not have survived that first surgery. We took our sweet Abbi home at 14 days old and we were able to hold her, see her first smile and love her unconditionally. Had Abigail been taken to any other children’s hospital on the globe, chances are, we wouldn’t have gotten the opportunity to take our daughter home, ever.
We held our precious Abbi for the very first time at Nationwide Children’s. It was there that we also held her for the very last time the night she went to meet Jesus at 11 weeks old. We know that the miracles worked through the hands of the nation’s best surgeons and cardiologists were responsible for every single breath she took.
Far too often, the success of those in the medical field is measured by the length of the life span of their patients. Some would look at her story and see a child who didn’t beat the odds, who didn’t live to see her first birthday. The Heart Center staff gave our family so much more than a “success story.” They gave our daughter 11 weeks of life. They gave our oldest daughter 11 weeks of being a sister. They gave my husband and me 11 weeks of unexplainable joy. Most of all, they gave our family a lifetime of memories and love.
Request a Heart Appointment