'Every child deserves a family,' says couple who care for dying foster kids

Barb and Sam Pike open their hearts and their home to some of Nova Scotia's sickest children. All of these children are in foster care.

They know some will never get better. Others will die.

"I think every child deserves a family, not an institution, so we like to make that happen for our children that are so medically fragile," Barb Pike said as she cradled a four-month-old premature baby girl who is fed through a tube.

Dressed in a pretty pink-and-white outfit, the infant's tiny fingers tightly grab Barb's hand. She stops crying once Pike cuddles her.

The retired Windsor Junction couple nurture these ill babies and children around the clock. They've done this for the past 24 years. Barb is a retired nurse, Sam is a retired sailor.

One of their foster children, a terminally-ill boy with a progressive disease, died in this couple's home last June. He was 13. He came to live with the Pikes when he was about five.

"I think, [for] any parent, it's very difficult for a child to die before a parent," Barb said. "We knew he had a terminal illness. We didn't know it was going to be that quick for him to pass."

The boy's birth parents came to the Pike's home a few days before he died to say goodbye.

"We chose not to take him to the hospital," Barb said. "He died at home very comfortably. He went to sleep and we were with him. He just passed on."

Preparing for loss

To try to prepare for the boy's early death, the couple worked closely with the IWK Health Centre's palliative care team, foster care social workers and the child's worker.

"I don't think you ever prepare yourself for a child dying," Barb said. "You know he has a terminal illness, you know he's getting worse, but you're never prepared."

Barb said she grieved that young boy's death just like it was her own birth child.

"It was a grieving process, one that took me a while to get over," she said. "You don't lose children to death and get over it the next week or the next month."

The family still talks about the boy. They fondly remember his bubbly personality, his smile and his sense of humour.

"The day before he died he was telling us corny jokes," she said.

Adopted four special-needs children

The Pikes have one biological daughter. They've also adopted four special-needs children two sets of siblings from the foster care system. They're now grown.

Sam came from a family of 14 children. One of his sisters had severe cerebral palsy.

"So he was very used to being around children with special needs. I guess that's kind of why we continue through this journey," his wife said.

Medically fragile children may have a chronic condition that requires a strict daily regimen and specialized care to prevent a crisis. They may include infants with severe diabetes, children who suffer severe epileptic seizures, those with cerebral palsy and those who require tube feeding.

There are about 25 foster homes set up for "medically fragile" children across Nova Scotia. The Pikes' home has a lift system that transports children in a wheelchair from a bedroom right to the bathroom shower. They've also added a piece on their home so wheelchairs can fit around the kitchen table.

Right now, the couple is also fostering a school-aged boy who is non-verbal and uses a wheelchair. He also uses a feeding tube. These children cannot be identified because they are wards of the Nova Scotia foster-care system.

"My husband and I work well as a team," Barb said. "One will get up and start getting the little guy ready for school while the other will go out and get the feeds ready for the other and medicines ready."

The family's routine can include up to three to four medical appointments a week.

"You're in and out of the hospital, they could be in for surgery, you're in there then for a few days or a few weeks. So yeah, it can be harried."

Something as simple as watching one of her foster children smile especially the ones that were never expected to live brings the Pikes much joy.

"We celebrate small steps here, not great big ones, because small steps are what we get," Barb said. "A child being able to hold their head up, things like that, that you kind of expect other children can do. But in our case that can be a big thing for some of our children just to be able to do that."

Couple has fostered dozens

More than 60 children, from just 12 hours old to age 18, have passed through the Pike home. Some returned to their birth families, others have been adopted or have gone to long-term homes. Some remain in care.

The now 18 year old child was having about 100 seizures a day when he arrived. Doctors told the Pikes that boy would live to be five or 10. With loving care from the Pikes, he defied the odds.

"[He's] still alive and going strong and doing well," Barb said. "His seizures are better controlled. We still bring him home for Sunday dinner.

"And his neurologist says, 'Barb, you guys gave him such good care, that's kind of why he's still with us.' I think that God had a little hand in that myself."

Another foster child who suffered from a brain disorder remained in the couple's home for 16 years. But he had to be moved to an institution because he was becoming violent and the Pikes could no longer keep him.

"At home it was a safety issue for him and the rest of our family," Barb said.

Saying goodbye is hard

Saying goodbye to these foster children when they leave is difficult for the Pikes.

"It's hard, a piece of you goes with that child," Barb said. "You've put a lot of time and effort in to that child, [you] love them. It doesn't matter that they're not yours. They live with you and you love them.

"We just hope that the new parents, or if they're going back home to their birth family, will keep us in that child's life because we were an important part of that life of that child for a number of months and sometimes years."

The Pikes encourage others to consider fostering children who cannot live in their biological home.

"They need to be in a foster home that can grow them up as a family, give them their values and whatever else you give your own children," Barb said.

"They need someone to love them, someone to hold them, someone to cuddle them when they're babies when they wake up and cry. They need that."

Great need for more foster families

Nova Scotia is looking for foster families of all backgrounds to take in these children.

"And like the rest of the country, the rest of the continent really, the numbers are dwindling," said Vicki Black, Nova Scotia's provincial coordinator of foster care services.

"It's difficult to recruit a family, certainly, where they know that the child's prognosis is very poor.

"For families who are taking in terminally ill children, or very medically fragile children, they live with that reality that that child may actually die in their care or at some time after they've cared for them and that is particularly difficult."

Foster care by the numbers

There are about 1,050 children in care in Nova Scotia. Of that number, about 650 are in foster homes.

"We have other children in care who are unable to be placed in foster homes either because of their very high needs or they may be already in adoptive homes awaiting finalization of their adoption or they may be older children who are preparing for independence," Black said.

If high-needs children could not be placed with families like the Pikes, most of them would likely need to be in a nursing home, Black said.

"We have children of all levels of care who just need a family. They need to have the routine and regular care and nurture that a family provides."