Ultrasound technology has come a long way in the past few decades. Gone are the fuzzy baby blob prints, now replaced by 3D images of cute button noses and chubby baby cheeks. Along with the adorable keepsakes has come the ability to detect anatomical abnormalities and life-threatening medical conditions before birth. However, major defects can still be missed and if you’ve never heard of CHD (like most parents) than you would never know to ask about the condition of your baby’s heart. Addy’s wonderful parents, April and Corey, have shared with us the story of their daughter, Addy, whose severe heart defects were undetected before birth.

Addison Lucille Leigh Staton was born on December 18, 2014. We were expecting a beautiful healthy baby girl; she was beautiful, but she wasn’t healthy. Addy had problems breathing right after birth, when she would cry she would be pink but when she would stop she was blue. Six hours after she was born, we were told Addy had only half a heart. Her heart condition was causing her blood to over-circulate. Her heart was sending oxygenated blood back to the lungs and not to the rest of her body, while the unoxygenated blood continued to circulate to her other organs.

She was transported via ambulance to Vanderbilt children’s hospital the same day. When she arrived at Vanderbilt, she was unstable and they were unable to reverse the damage from her over-circulation at birth. Through echocardiagrams and a heart cath, we learned that Addy also had a coronary anomaly. Her coronary arteries were ventricular dependent, her right one was super tiny, and her left one was enlarged with pop offs. Addy’s official diagnosis was Hypoplastic Right Heart Syndrome caused by pulmonary atresia with an intact ventricular septum, coronary anomaly, and pulmonary artery stenosis. They told us they were unsure if she would be a candidate for surgery or be listed for a heart transplant.

On Christmas eve Addy started getting sicker, she was in severe heart failure. She was rushed to surgery to have bands placed on her pulmonary arteries, her lungs were stealing all of her oxygen-rich blood instead of allowing it to circulate her body. We were told that her surgery was a success. Thirty minutes later we received another call. Addy had gone into heart block and they placed her on ECMO (life support). We were not given very good odds and were told that Addy was VERY SICK. She was listed for a new heart at 11 days old, the same day she came off of ECMO. Addy received her gift of life on January 20th 2015, only 3 weeks after being listed.

She had a lot of complications after transplant and her borrowed heart was weak at first. When her new heart started improving they found a blood clot and had to open her chest back up to retrieve it. The next day Addy almost lost all the blood in her body and had to receive multiple blood transfusions. Not long after this Addy went septic, she had MRSA in her blood stream. They told us she wouldn’t make it, she proved them wrong. We were able to leave the hospital with Addy for the first time in April of 2015, she was admitted a week later for rejection. This time her hospital stay was only a week. We brought Addy home in May of 2015. She was doing amazing. On June 9th 2015 Addy Lu gained her wings unexpectedly. We were blessed with almost 6 months with our Angel. We now run a non-profit in memory of Addy, Angel Addy’s Heart Hugs, to serve other families affected by CHD.

There is no cure for CHD, even heart transplant is not a complete cure. It is often said that with heart transplant that you are just trading one set of problems (typically anatomical/structural issues) for another (battling rejection). In Addy’s case she didn’t have any other options and a heart transplant allowed her to experience life at home with her parents and big sisters. Help us spread awareness for the most common birth defect by sharing Addy’s story and encourage friends to ask heart-related questions at their anatomy ultrasound.

PROJECT HEART IS A 501(C)(3) NONPROFIT DEDICATED TO RAISING FUNDS FOR CHD RESEARCH. HELP US CHANGE THE LIVES OF CHILDREN LIVING WITH CHD. DONATE A TAX DEDUCTIBLE GIFT TO PROJECT HEART AND SUPPORT CHD RESEARCH HERE: HTTP://THINKPROJECTHEART.ORG/DONATE