White Coat, Black Art

'They taught me how to be a doctor': How one family changed the way this physician practises medicine

Dr. Julia Orkin's life — and the course of her medical career — changed when she met a very special patient and her family in 2010.

Dr. Julia Orkin took on a greater-than-normal role in helping care for girl born with a rare genetic disorder

Sloane Pasher, seen here with her mother Stephanie, was born with a rare genetic disorder called Aicardi syndrome. She died on Feb. 21 at the age of eight. (Submitted by Neil Pasher)
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Dr. Julia Orkin's life — and the course of her medical career — changed when she met a very special patient and her family in 2010.

At the time, Orkin was a young doctor doing a fellowship at the Hospital for Sick Children in Toronto.

There, she met Neil Pasher and his wife Stephanie. Their young daughter Sloane was born with a rare genetic disorder called Aicardi syndrome.

Sloane would never walk, talk or eat on her own. She began suffering seizures at three weeks old, requiring many visits to SickKids and long stretches in the ICU.

Her immune system was weak and even something like a cold required a visit to the local hospital in Whitby, Ont., whose staff would not be familiar with her condition.

"It was an absolute nightmare to deal with Sloane's care," Pasher told White Coat, Black Art host Dr. Brian Goldman.

Dr. Julia Orkin is medical director of the Complex Care Program at the Hospital for Sick Children in Toronto. (SickKids Hospital)

After their first consultation, Orkin was compelled to help Sloane and her parents in any way she could.

She has fond memories of Sloane, who died Feb. 21 at the age of eight.

"Despite her limitations, Sloane had a big personality," Orkin remembered. "She loved to get her hair done. She loved to be held. She loved getting dressed up. She was always impeccably dressed."

Orkin, who is now medical director of SickKids' complex care program, said taking care of Sloane informed her decision to change the way doctors at SickKids and community hospitals care for children with exceptional medical needs.

She became Sloane's primary care physician, and the complex care team at SickKids took some of the burden off the Pashers, who had in Sloane's first year been orchestrating all her clinical appointments and meetings with specialists.

"As soon as the complex care team [got] involved, they quarterbacked all the medical side of things … And it just allowed us to be a family," said Pasher, who is also father to twin girls, Avery and Kinleigh, who are two years older than Sloane.

"We were able to spend more time as a family and enjoy life as a family."

Orkin arranged a meeting with the head of pediatrics at Lakeridge Health in Durham Region, Ont., and came up with a treatment plan for Sloane at the community hospital.

"This meant we didn't have to rush to SickKids every time Sloane needed medical attention," Pasher said.  

Orkin has since used this model of partnering with local hospitals to build complex care programs for patients in several other communities in Ontario, including Barrie, Orillia, Peterborough and Timmins.

'More than just a doctor'

Orkin and the Pashers developed a close relationship during Sloane's care.

Orkin includes photos of Sloane in her presentations to medical students and residents about complex care.

Pasher volunteered at the complex care program to advise parents in similar circumstances and share what he and his wife have learned.

'Sloane was an endearing little girl. She had a sparkle in her eye and she just had a way with people,' said her father Neil Pasher. (Submitted by Neil Pasher)

Orkin was present in February when Sloane died at Emily's House, a Toronto hospice for children with exceptional needs.

Sloane was comfortable in her bed surrounded by her parents and sisters. Her grandparents were in the other room.

"There was a feeling of such calm," Orkin said. "It was so beautiful, and it was like a closing for everybody that had cared for her."

Their closeness didn't stop there. Orkin also spoke at Sloane's funeral and also brought her husband and children to pay their respects.

The Pasher family gathers for a Christmas photo in 2017. (Submitted by Neil Pasher)

"She was more than just a doctor to us," said Pasher, who added that Dr. Orkin took an interest in the well-being of other members of his family.

"I'm just so proud as a dad to have had a little girl that could never walk, could never talk, but has had such a massive impact on our world."

Since Sloane's death, the Pashers have been raising funds to open a respite hospice that would serve families in the Durham Region for kids with medical complexities.

Their foundation has secured the land, and they hope to open the doors to Sloane's House in 2021.

Written by Showwei Chu. Produced by Sujata Berry.


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