Meet Maxine the mighty heart warrior. Her mom, Melissa, recalls finding out she was pregnant with her on February 13, 2015 which was coincidentally during Congenital Heart Disease (CHD) Awareness Week. “At the time, I didn’t know about CHD Awareness Week or just how important it would become to our family,” says Melissa. During a fetal echocardiogram, Maxine, who is now 16 months, was diagnosed with a combination of congenital heart defects including Transposition of the Great Arteries (TGA), a Ventricular Septal Defect (VSD), and Pulmonary Stenosis. Because of Maxine’s combination of defects, her CHD is classified as complex.
“I remember when the cardiologist took us into his office and started to draw a picture, took out diagrams, and a model of a normal heart. He explained to us he found several heart abnormalities under the umbrella term of Congenital Heart Defects,” says Melissa. “Some of the abnormalities Maxine’s heart has are often found on their own, but because she has several of them together, her CHD is considered complex. When we heard this news, we [my husband Randy and I] quickly realized that our life would no longer be ‘normal’ and we needed to figure out what our new ‘normal’ would look like.”
For much of Maxine’s life, that new “normal” has included countless doctor appointments and procedures, living in and out of hospitals, and in July 2016, her first open-heart surgery. In December 2016, Maxine was admitted to the Regenstein Cardiac Care Unit at Lurie Children’s with issues related to heart failure. She is now waiting for a new heart.
Melissa says that as Maxine waits for a new heart it brings their family hope. “Where to even begin! It means our mighty Maxine gets a second chance at life because another family was selfless enough to make a decision to bring hope to our family through their unimaginable loss,” says Melissa. “Maxine’s new heart will mean that our family will be together again and Maxine will be able to be back home growing and thriving where she belongs!”
Maxine was originally followed by cardiologists at Advocate Christ Hospital. She was transferred to Lurie Children’s when it was determined her heart was in failure and she would need a heart transplant.
Lurie Children’s Pediatric Heart Failure and Heart Transplantation Program, the only program of its kind in the state and the second largest pediatric heart transplant program in the country, is widely known for its abilities to provide lifesaving treatment to infants, children and young adults with severe heart disease.
Performing an average of 15 heart transplants each year, our surgeons transplant young patients who have a wide array of complex and high-risk conditions. Patients’ heart problems range from those present at birth (congenital) to arrhythmia and cardiomyopathy.
Despite the complexity of our patients’ conditions, our patient outcomes are better than national averages for pediatric transplant centers. Specifically, our three-year survival rates for patients and the graft (new heart) are above 90%, compared with the 83% national average.