Keegan and Madeleine’s story
Keegan was born on September 12, 2007, with Tetralogy of Fallot (TOF) with pulmonary atresia, a complex congenital heart defect. At only one day old, he had open-heart surgery at Children's Health. Keegan came out of surgery on ECMO support and suffered more problems, which caused him to be listed for a heart transplant at five days old.
“Our greatest memory at Children's Health was the day we learned of an available heart for Keegan,” says Madeleine, Keegan’s mother. “The entire CICU staff packed the halls as we were ushered in and cheered the news. We experienced such a range of highs and lows during his first week of life alone, and we felt completely supported during that terrible, yet miraculous time.”
On September 19, 2007, Keegan became the youngest and smallest patient to have a heart transplant in Texas and the smallest in the country at the time. He was seven days old and weighed less than five pounds. Keegan was the 99th heart transplant performed at Children's Health.
Over the years, Keegan's struggled with his health until being diagnosed with a form of macrophage activation syndrome (MAS). This caused him to have many small strokes, permanent brain injury, kidney failure, and bowel failure. His MAS diagnosis allowed his care team to find the right medicines to help him feel better.
“Although we have had ups and downs over the last 14 years, many of the doctors, nurses, and staff at Children's Health have become life-long friends of ours,” Madeleine says. “The care team has saved his life on multiple occasions, and we could not be more grateful. Had we not sought out the excellent doctors and surgeons at Children's Health before Keegan's birth, he would not be here today.”
Keegan is now almost 14 years old, and though he still faces many battles, he is happy and stable. Through it all, his family has been his number one advocate – not only making sure he receives the best care, but sharing their voice and experiences to advocate for other patients like him.
Just before Keegan’s first birthday, Madeleine was asked to help form the first set of family advisors at Children’s Medical Center Dallas. As part of our Family Advisor Network (FAN), a partnership of current and former Children’s Health patients, their families, and our team members. Creating this partnership has allowed us to shape our patient experience and remain focused on patient family-centered care.
Questions with a FAN Family
Thirteen years later, Madeleine is still committed to giving back as an advisor. She shares why she believes being involved in FAN is vital not only for the care of her child but also for families like hers.
