Sask. family struggles to bring daughter with rare condition home from hospital due to lack of rural medical supports

A Saskatchewan family is highlighting the need for more medical supports in rural communities after they say they could be forced to relocate in order to seek treatment for their daughter.

Grace Hordos was born with a rare genetic condition called Type IV Klippel-Feil syndrome, which affects the bones and muscles in her body.

“There are only 14 others that we are aware of worldwide that have this type of Klippel-Feil and it is the most severe,” Grace’s mom, Amanda Hordos said.

At just eight months old, Grace has been staying at the Jim Pattison Children’s Hospital (JPCH) in Saskatoon for most of her life, after being admitted in February. As a result of her condition, Grace relies on a tracheostomy, a feeding tube and for most of her time at the JPCH she’s been hooked up to a ventilator.

“Because of where we live, we cannot take her home on a ventilator, because we don’t have access to a respiratory therapist,” Amanda said.

“We’ve been told that if Grace does need a ventilator permanently we cannot have one at our farm. We would have to move or we don’t bring her home.”

Amanda has been staying at the Ronald McDonald house in Saskatoon for as long as Grace has been in hospital. Amanda’s husband, along with their two other young children, live at the family farm south of Raymore, Sask., about a two-and-a-half-hour drive from JPCH .

“It’s extremely frustrating that we live in a province that is made up of mostly farmers and we don’t have the same access to medical services that someone living in a city does,” Amanda said. Adding a minor cold could mean Grace needs to be hooked back up to a ventilator.

Grace Hordos, eight months, has spent most of her life being treated in the Jim Pattison Children's Hospital in Saskatoon. (Courtesy: Amanda Hordos)

If Grace does not require a ventilator, there is hope they could bring the little girl home.

Her doctors say she could be ready to leave the hospital as early as the end of the month, but there is one condition: Grace needs registered nurses to provide her homecare in order to leave JPCH.

“She needs eyes on her 24 hours a day,” Amanda said, adding that level of care is not something she and her husband can provide on their own.

Amanda said Grace’s medical team is working directly with the Saskatchewan Health Authority (SHA) to hire homecare positions for the family. However, she was told the job might not be posted until the end of September.

SHA officials could not comment on the specifics of the Hordos family’s situation. However, in an email statement, the SHA said it works closely with families to ensure health care services are delivered, and sometimes that means delivering care at home rather than in regional centres.

“Recruitment plans are in place to help alleviate some of the staffing challenges in rural communities,” the statement read.

“Many of the specific needs required for special care require specialized staff that are often quite challenging to recruit as their demand exceeds supply. These recruitment challenges are not unique to rural Saskatchewan, but nationally as well.”

Recruitment is a challenge across the board, but Tracy Zambory, the president of the Saskatchewan Union of Nurses (SUN) said rural communities are also struggling with retention.

“The people that are there are burnt out. [The government] has turned rural areas into a human health resource desert. They have not paid attention to them in a long time,” Zambory said.

“When people are not supported in their job, particularly in healthcare, they are not going to stay.”

Zambory said the lack of retention creates a “ripple effect” leading to the inability to recruit new hires in smaller centres simply because there are not enough resources to attract and support new workers.

She said recruitment and retention challenges lead to service disruptions and closures in rural areas, which is why many residents are then forced to seek treatment in urban centres.

“Everybody in this province should have access to healthcare in whatever fashion that they need it,” Zambory said.

“That’s part of the whole idea of publically funded, publically administered healthcare, but when it isn’t properly funded and we allow particularly rural areas to become a human resource desert this is what happens.”

Amanda continues to be hopeful that once the SHA posts the homecare position, the family will be able to convince people to apply.

“We just want to have our whole family together again and it’s been a long time,” Amanda said.

“We’ve only had 11 days at home with Grace.”