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Hospice Equals “Hope” for Parents of Medically Complex Child

Hospice can be a frightening word to a family with a medically complex child. But not to Patty and Zach Fazio. To them, “hospice” equals “hope” – hope for the freedom to embrace every joy-filled moment with their baby boy.

When Patty and Zach brought four-day-old Leo home, they were greeted by balloons, family…and their Katybug team from Delaware Hospice. It was a joyous occasion; Patty and Zach had been told not to even bother bringing a car seat to the hospital.

Thirteen weeks into her pregnancy, Patty had gotten the frightening news: her baby had Trisomy 18 – a genetic condition with a high rate of miscarriage, stillbirth, and fatality before the age of one. They were encouraged to terminate the pregnancy. Ultimately, they decided to enjoy and love Leo for as long as he was able to live. If he was born alive, they wanted him to have “comfort care” rather than significant medical intervention.

As baby Leo defied one odd after another in his first few days of life, the family focused on enjoying each tiny moment and milestone. But at every turn, they were reminded of how serious Leo’s condition was and not to let their hopes get too high.

When it became clear Leo might leave the hospital, the hospital’s palliative team set the family up with Delaware Hospice’s Katybug pediatric program to support them in their home. Ironically, it wasn’t until they met their hospice team that they felt they were allowed to hope.

Patty remembers Nurse Colleen giving Patty her “first genuine smile”—not one of sympathy, but of hope, as if saying, “We have hope for this baby’s life. No matter how short. It doesn’t matter. Hope in the time that’s given.”

A year later, the family’s Katybug nurse Lynn was at Leo’s first birthday party, rejoicing over Leo’s refusal to eat another bite with a shake of his head. Lynn had become part of the family, and Leo was thriving. Only about 10% of babies born with his condition make it to their first birthday. He was the family’s little miracle.

In a short time, Leo will “graduate” from Katybug. It’s a happy milestone, although Zach wishes they could keep Katybug forever. Getting in-home services and having someone to call – even in the middle of the night – has been an enormous help to the family, especially since the hospital is a 2-hour drive.

Children at any stage of any serious illness can benefit from the expertise of pediatric palliative and hospice care specialists like the caring team members of Katybug. In addition to caring for children from birth through age 21, Katybug also offers prenatal support to families awaiting the birth of a baby diagnosed with a serious condition.

Katybug is the only program of its kind in Delaware with Certified Hospice and Palliative Pediatric Nurses on staff. Katybug’s pediatric specialists are experienced in walking alongside children and their families during these tough times, so the family can focus on the joys of life instead the child’s illness.

If you know a family who may benefit from our services of transitioning from hospital to home; in-patient care and/or respite care; education, assistance, or companionship; symptom management support; coordination with physicians; and emotional and spiritual support, please visit katybugde.org or call 800-838-9800 to learn more about Katybug.

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