Hospice equals hope for parents of medically complex child

Hospice can seem like a frightening word to a family with a medically complex child. But not for 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 4-day-old Leo home, they were greeted by balloons at the door, two excited big brothers, adoring grandparents ... 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 a phone call with the frightening news: Her baby had trisomy 18, a genetic condition with a high rate of miscarriage, stillbirth and fatality before the age of 1. They were encouraged to terminate the pregnancy. The family was faced with one difficult decision after another.

Ultimately, they decided to enjoy and love Leo for as long as he was able to live. They determined that if the baby was born alive, they wanted him to have “comfort care” rather than significant medical intervention. They arranged to have him baptized in the operating room at delivery. And they opted for a plot in a cemetery near their new home in Delaware instead of a plot next to Patty’s family members three hours away.

Throughout the journey, Patty and Zach were grateful to have the help of the palliative team at the children’s hospital where Patty delivered via C-section at 38 weeks. As baby Leo defied the odds, one 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 there was a possibility Leo would leave the hospital, its palliative team set the family up with Delaware Hospice’s pediatric program, Katybug, to support them in their home. And ironically, it wasn’t until they met their hospice team that they felt they were allowed to hope.

Patty remembers first meeting Colleen, a Katybug educator with a straightforward style and nearly 40 years of experience. It was Colleen who gave Patty her “first genuine smile” – not one of sympathy, but of hope. Patty explained it was as if Colleen were saying, “These people 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. “He’s saying ‘no!’” everyone exclaimed. Lynn had become part of the family, and Leo was thriving.

Only about 10 percent of babies born with his condition make it to their first birthday. He was the family’s little miracle. Once Lynn has helped the family through one more cold and flu season, Leo will “graduate” from Katybug.

Even though the step should be a happy milestone, Zach wishes they could keep Katybug forever. Getting in-home services and having someone to call at a moment’s notice – even in the middle of the night – has been an enormous help to the family, especially since the children’s hospital where Leo is seen is a 2-hour drive away.

“We want to keep him away from the hospital and the pediatrician as much as possible [for fear of infections],” said Zach. “If we can use the hospice resources, it’s amazing. We don’t want to graduate!”

Children at any stage of any serious illness, whether they’re receiving curative treatment or not, can benefit from the expertise of pediatric palliative and hospice care specialists like the caring team members in Delaware Hospice’s Katybug pediatric program. 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 of the child’s illness.

“As Patty said earlier, the Fazio family tries to ‘Reel it in and focus on what’s important.’ To see them do it is such a beautiful thing,” said Lynn.

For more information, go to www.katybugde.org or call 800-838-9800.