Caring for Medically Complex Children at Home: Post Transplant

Six-Month Old Baby Andrew Receives a New Heart and a Fresh Start for his Family with the Assistance of St. Mary’s Healthcare System for Children

For the Dominguez family, bringing their third child into the world was met with unbearable hardship and unexpected obstacles – a road they had unfortunately travelled before. But with the help of one of New York’s leading pediatric post-acute care organizations, St. Mary’s Healthcare System for Children, this family may be destined for a path of endless possibilities and hope.

After losing their first born in their native Columbia to a battle with Kawasaki Disease, an illness that caused high fever, inflammation of the blood vessels and irreparable damage to the baby’s heart, the family came to the United States in hopes of a better life. Their luck seemed to change when the couple gave birth to a healthy baby boy, Matthew, who is now a toddler. And then on July 20, 2011, the growing family welcomed Andrew, another beautiful baby boy, to the world.

Just three months later, history began to repeat itself for the Dominguezes. Baby Andrew became gravely ill with a high fever. He was rushed to the hospital where doctors diagnosed the baby with dilated cardiomyopathy, an enlarged and weakened heart. The prognosis was grim – Andrew would need a new heart in order to survive.

After months of waiting, their prayers were answered on Christmas morning when baby Andrew received a heart transplant. A heavy weight had been lifted; but just as quickly returned when they realized the grueling challenges that lay ahead – caring for their medically fragile child at home. Having a special needs child affects all family members and has a tremendous impact on all aspects of their lives. And just three weeks after life-changing surgery, Andrew was to be discharged home.

St. Mary’s Healthcare System for Children will transition the Dominguez family home and into a continuum of post-acute care services through its new Certified Home Health Agency, Extraordinary Home Care, to help the family better manage baby Andrew’s complex medical needs. Post-transplant care may include skilled nursing visits, education and training for the parents on how to care for their child’s medical condition, medication compliance in administering upwards of 15 medications a day, and home health aide services.

Following hospitalizations in acute care facilities for complications from premature birth, illness, and injury, or when special services are needed, children and their families come to St. Mary’s to receive exceptional medical care and learn how to manage their condition. St. Mary’s is often referred to as the “rest of the story” in pediatric care.

“Caring for a child at home, surrounded by loving family, is the most appropriate setting for children to heal and thrive,” remarked Hope Mavaro Iliceto, RN, Chief Administrative Officer of St. Mary’s Home and Community Programs. “St. Mary’s family-centered model of care encourages families to play an active part in the child’s plan of care and recovery process. Our clinicians work closely with the family to address medical, rehabilitative, and emotional needs of both the patient and his family. We are pleased to help welcome Andrew and his family home.”

Extraordinary Home Care is the first Certified Home Heath Agency (CHHA) approved to open in the past several years by the New York State Department of Health. Extraordinary Home Care specializes in caring for the emerging population of children, adolescents, and young adults with complex medical needs. Extraordinary Home Care recently began to admit patients and will take additional cases by early spring when final and full approval is expected by the DOH.

Jose Dominguez was introduced to St. Mary’s through his relationship with Angels on the Bay and St. Mary’s Angels, long-time supporters of St. Mary’s Healthcare System for Children. “Due to advances in medicine and technology, children are coming to St. Mary’s sicker and sooner than ever before,” said Jeff Frerichs, President and CEO. “St. Mary’s is grateful for generosity of the community in supporting vital programs and services that are essential to the well-being of our children.”

The costs of baby Andrew’s care are being absorbed by St. Mary’s to afford the family some peace of mind as they learn to care for their son and get back on their feet. With mounting medical bills and other financial burdens, the family struggles to make ends meet. St. Mary’s has set up a Family Emergency Fund to assist patient families in times of crisis.

Support St. Mary’s Family Emergency Fund to help Andrew and other children like him, or call 718-281-8890 to make a donation.

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