"It was a whirlwind," exclaimed Michelle Schnepper. "A specialist saw fluid around Macie's heart, and we had to choose a hospital where it would be safe to deliver Macie—fast."
Mrs. Schnepper and her husband Michael relied on prayer and gut instinct to choose Barnes-Jewish Hospital. Macie was born there prematurely at 33 weeks, with a severe disease of the heart muscle, called cardiomyopathy. After one week, Macie transferred to St. Louis Children’s Hospital.
Thus began Macie’s odyssey from sickness to health. Her team of physicians was led by Charles Canter, MD, Professor of Pediatrics at Washington University School of Medicine and the recipient of research funding from the Children’s Discovery Institute.
Stressful start, happy ending
Macie spent her first month of life in the hospital, feeding and growing. To the amazement of her medical team, Macie did not require breathing assistance or medication. She headed home, but struggled to eat and gain weight. At two months of age, Macie was back in St. Louis Children’s Hospital for a procedure to open up a ventricle of her heart. Macie went home again, but her parents' hopes were dashed when three-month- old Macie went into cardiac arrest.
“Our baby was lifeless when we got to the local emergency room,” recalled Mr. Schnepper. “Fortunately, Macie was revived and transported back to St. Louis Children’s Hospital.” After another month of care and a brief return home, the four-month-old received a heart transplant.
Today, Macie is a happy, active, feisty preschooler. “She’s small,” observed Mrs. Schnepper, “but she can do pretty much everything a normal four-year-old can do.” Although the family still protects Macie from infection by avoiding crowds, their life is normal.
“Those extreme highs and lows,” said Mrs. Schnepper, “that rollercoaster of having a gravely ill child—it’s over, thank goodness.” Adding to their joy is the family’s newest member—baby Lauren, born healthy in 2010.
Gratitude and hope
The Schneppers feel blessed to have found their way to St. Louis Children’s Hospital. Mrs. Schnepper also praised Dr. Canter, “who really has a strong connection to Macie, and has done everything to make sure our daughter can thrive.” Macie still visits the hospital for check- ups, and according to her mother “always smiles when she gets there. You can tell she has faith in the hospital.”
Part of Macie’s workup is a cardiac catheterization every 1 to 2 years, to check for post-transplant coronary artery disease. Currently, Dr. Canter is collaborating with Samuel Wickline, MD, to study a non-invasive method, using an innovative type of MRI to test children like Macie for coronary artery disease. The study is funded by the Children’s Discovery Institute.
The Institute has also funded a collaboration between Dr. Canter and Patrick Jay, MD, PhD, which examines the link between glucose uptake and heart failure in children. This study may one day lead to treatment strategies that could enable some children to recover from heart failure without a transplant.
“The entire medical team did an amazing job with Macie,” said Mrs. Schnepper. “I hope Macie’s story encourages more people to make organ donations and to support research for kids with heart disease. These are gifts of life.”
Charles Canter, MD is Professor of Pediatrics at Washington University School of Medicine, Medical Director of the Cardiac Transplant Program and Director of Non- Invasive Cardiac Laboratory, St. Louis Children’s Hospital.
Patrick Jay, MD, PhD is Assistant Professor of Pediatrics and Genetics at Washington University School of Medicine and a pediatric cardiologist at St. Louis Children’s Hospital.
Samuel Wickline, MD is Professor of Medicine, Physics, Biomedical Engineering, Cell Biology and Physiology at Washington University and Director of the Washington University Consortium for Translational Research in Advanced Imaging and Nanomedicine (C-TRAIN).