Complex health patients aging out of pediatric care continue to struggle

Hamilton families with children needing specialized care fear for their kids’ quality of life once they age out of the pediatric system.

Hospitals like McMaster Children’s Hospital offer complex care for children up to 18 years old, but families say the “transition phase” out of the system begins at 16, meaning families will be redirected to other care facilities, mainly adult hospitals, to see other physicians.

READ MORE: Parents of children with complex health needs say they are ‘slipping through the cracks’

One mother spoke to CHCH News recently and said her daughter had an unfortunate close call due to these circumstances and wants better solutions immediately.

Tammy Embrey said her 18-year-old daughter Keisha, who has complex care needs, went into cardiac or respiratory arrest Monday morning at Juravinski Hospital.

“She was having belly issues, and during a CAT scan, and when they gave her a sedative when they put her to sleep, she coded blue, twice on the table and they were able to revive her,” Embrey said.

“Thankfully they were able to save her life and this has brought up a big concern to them now, this is not the situation they want to be in right now.”

Embrey said Keisha has numerous disabilities and while being administered medication, her body failed to handle the dosage given to her.

Since leaving McMaster’s Children’s Hospital in April due to her age, Embrey said Keisha’s transition to doctors in the adult system is difficult.

READ MORE: Over 2,400 children waiting for surgery at McMaster Children’s Hospital

Hamilton Health Sciences said it cannot speak on individual patients, but said its staff work with families to appropriately and safely support their care needs. This includes the transition from pediatric to adult services.

Other families are joining Embrey who have concerns and want quicker specialized care for their children.

Leslie Sumner said her 16-year-old son Calum is living with a rare and severe neuromuscular condition and requires a breathing tube.

“I mean my family doctor is great, she said sure, but I’m going to be relying on you, as a mom, who knows your son, because I don’t know the community systems, school systems or the hospital systems are going to work for him.”

Back in April, the province launched its pilot program where it sunk nearly 100 million dollars into specialized pediatric care.

READ MORE: Ontario launches pilot project for children and youth with complex needs

The program runs across three hospitals in Ontario including in Hamilton at McMaster Children’s Hospital.

Families met with Hamilton Mountain MPP Monique Taylor on Tuesday to address their concerns about the transition.

Taylor said she’s calling on the Ford government and the health sector to task a team of medical professionals to help shift each family to the right doctors when leaving the pediatric sector.

“We know that the government will come in with a stroke of a pen and create a new program, but that doesn’t necessarily work for families, we need full consultation and understanding of where we need to start with families, what to correct, that’s the first step,” Taylor said.

“It will be with the help of doctors, with the help of McMaster, help from SickKids, they are the ones who know what their kids need.”