When Aissa Bomben was pregnant about five years ago, she and her husband Craig felt they knew what to expect.

After all, this was their fifth child and things were becoming “old hat,” she said. However, when they went in for their five-month appointment, the ultrasound showed that the baby had a number of complex medical issues. He had a contingent heart defect and spinal and neurological issues.

“It was devastating,” said Bomben, who lives in unincorporated King County outside of Redmond. “It was very, very devastating.”

Although doctors detected the baby’s various medical conditions in utero, neither he nor Bomben were affected while she was still pregnant.

“It actually was an uneventful pregnancy…I was never in danger,” she said. “He wasn’t in danger either when he was inside of me.”

When the baby — who they named Luca — was born, things changed. Bomben said no one expected him to live more than two hours. Luca exceeded those expectations and survived the whole night, receiving an “OK” from the neonatologist to go home. Bomben said they were not prepared for this so they had no carseat or clothes for the newborn Luca. But they managed to get him home and Bomben said they were immediately set up with hospice care through Providence Hospice of Seattle.

This was four and a half years ago. Since then, Luca has further exceeded people’s expectations, graduating from hospice care after about a year and transitioning to palliative care for another year. Bomben explained that hospice care is typically for patients who are presumed to have six months or less to live. She said palliative care is for patients who are still seriously ill, but not as gravely. After transitioning out of palliative care, Luca became part of Providence’s Stepping Stones program for children from birth to 18. Now, Luca attends preschool in North Bend and loves it, Bomben said.

“He’s really made some leaps and bounds,” she said about the progress of his health.

Cynthia Brown, clinical manager for Stepping Stones, said when it comes to hospice and palliative care, the lines are a bit blurred with children. She said this is because when children are sick, their illnesses — especially the more rare ones — don’t follow a typical trajectory and are more unpredictable.

“We can prepare for end of life, but sometimes, they don’t (die),” she said. “Sometimes they survive.”

In the end, she said both hospice and palliative are types of comfort care.

Brown said Providence serves all of King County and most of the time, they receive patient referrals from the community, with Seattle Children’s Hospital as a big referrer. She said sometimes they get no new patients in one week and sometimes they will get four of five in one day.

“It varies so much,” Brown said.

Bomben said dealing with Luca’s health issues has changed her views on hospice care. Before this, the term “hospice” made her think of “a place where people went to die.” Now, she realizes hospice care not only addresses a patient’s physical needs and overall comfort through various therapies such as music and animal, but it also takes care of the patient’s family. Bomben said hospice care gave her and her family hope, helped dispel fear surrounding Luca’s health issues and taught them how to enjoy the time they had with him when they thought he only had a few months to live.

In addition, counselors with Providence also worked with Bomben’s four children, who range in age from 11-17, in dealing with their baby brother’s health issues.

“Hospice was fabulous with that,” she said, adding that she and her husband also received help on how to talk to their older children about Luca’s situation.

Brown said views such as Bomben’s initial one regarding hospice care is one of the reasons they don’t have more patients.

“When you hear hospice, you hear the end,” she said. “As a parent, you don’t want to hear that.”

To help spread awareness about hospice care and specifically, Providence, Bomben said she has spoken at past fundraising events for the organization. She shares her family’s story as a way to give back to something that has given them so much.

“I want them to see Luca…He’s one of the success stories,” Bomben said. “The success story is that we’ve been able to utilize all the tools we learned from (Providence). It’s been a life changer for us…I’m just thankful that he’s here.”

DID YOU KNOW?

November is National Hospice and Palliative Care Month. According to the National Hospice Foundation, this year’s theme of “Hope, Dignity, Love…It must be hospice” is to remind people that the care they provide “brings hope to help people live life as fully as possible, offers dignity when there is not a cure and surrounds families with love at one of life’s most challenging times.”