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 and Madeleine is still committed to giving back as an advisor. She shares why she believes being involved in FAN is vital for not only the care of her child, but for families just like hers.

• What interested you in becoming a member of our Family Advisor Network?

  Our priority at the time we began as advisors was giving back to the hospital that saved our son, and we have enjoyed being involved in many roles since then. Over time, that focus has shifted to ensuring we advocate for the best treatment not only for our family but for all patients and families who walk through the door at any Children’s facility.

• What does being a member of FAN involve?

  Currently as a board member for CMC Plano, I attend regular meetings, consult on different projects, respond to survey requests, and contribute to other committees as needed throughout the hospital system.

• What kind of projects or activities have you been a part of as a member of FAN?

  Over the years, we have also sat on multiple committees and boards, participated in resident training, advised on new construction, represented the hospital at the national 2010 Institute for Patient Family Centered Care Conference and Training Seminar, and facilitated the creation of family advisory committees in several specialty centers throughout the hospital.

  More specifically, my husband, Gray, spoke as an advisor at New Employee Orientation, educating new Children’s Health team members about the patient experience. Our 11-year-old daughter, Audrey, has also been involved with the new Children’s Medical Center Plano Expansion project giving her insights on amenities for patients and their siblings.

• What issues are you passionate about that you are advocating to see carried out at Children’s Health?

  I want to see a commitment to patient-family centered care on every level and see its transformative power on the relationship between care team and patients. I firmly believe that a patient-family centered approach benefits not only the patients and families but the providers and staff, as well. When this approach is fully implemented, it fosters a relationship where patients, families, and providers are treated with dignity and respect in a collaborative environment, where the knowledge, experience, and health of all involved is prioritized. When patients and families are empowered to participate fully in the care process, it naturally leads to better and safer outcomes, quality improvement, and a more satisfying and enriching work environment.

• Why do you think your involvement as a family advisor is important?

  I think the most important function of our involvement is to represent and speak up for patient families that are not able to do so. Caring for a child with any medical condition is stressful and difficult. We hope that our participation as Family Advisors to the hospital can ease that burden in even a small way for others, allowing them to focus entirely on their child’s health. However, we also strive to be strong advocates to other families on behalf of the providers and staff. A big part of being a champion for patients is championing the care team itself. As Family Advisors, we hope to be strong examples of how to be a collaborative team that cares for the patient, the family, the providers, and all Children’s staff.

To learn more about FAN and how to get involved, visit childrens.com/FAN.