After 'rollercoaster' of months in hospital, Sask. family receives funding to bring their daughter home
Published Thursday, October 22, 2020 2:15PM CST
Born on june 24, Briar Magel was born with Megacystic-Microcolon-Intestinal Hypoperistalsis Syndrome, a disorder that affects the muscles that line the bladder and intestines. The family says they cannot take Briar home because the medical equipment needed to keep her alive costs $100,000. Photo by Morgan Hewitt
SASKATOON -- After months of hardship, the Magel family has received funding from the Saskatchewan Health Authority to bring their almost five-month-old baby home within a few weeks.
Briar Magel was born June 24 and was diagnosed with MMIHS (Megacystic-Microcolon-Intestinal Hypoperistalsis Syndrome), a disorder that affects the muscles that line the bladder and intestines.
“We as a family hope no one will have to go through this rollercoaster as long as we did,” said mother Morgan Hewitt in an email to CTV.
The family was originally told the province currently has no funding for the TPN program for children. Without the funding, it would have cost the family $100,000 for Briar’s medical supplies to be at home. Being able to bring Briar home in just a few weeks is a huge success, the family says.
“By the time we get home that will be close to five months in hospital, five months of trying to find child care and working with everyone's schedules, five months of constant worry. That worry will never go away but at least it will be minimized slightly with her being surrounded by loved ones,” said Hewitt.
In an email statement, the Ministry of Health said that historically, Pediatric Intestinal Rehabilitation for Saskatchewan patients, including TPN programming, was offered through Alberta Children’s Hospital in Calgary. This meant that all Saskatchewan pediatric patients with intestinal failure were sent out-of-province to Alberta for care.
With the establishment of the Division of Pediatric Gastroenterology in Saskatchewan in 2017, certain aspects of the ongoing care of intestinal failure patients moved back to Saskatchewan with patients still being accommodated within Calgary's home TPN program, the ministry said.
The family will travel to Edmonton to assess Briar and to put her on he transplant list as the only cure is an entire digestive system transplant.
The family said they will continue to advocate for those in similar situations to them and is looking for other families to come forward to tell their stories so the province can move forward to find the best support possible.
They say they are grateful for the support they’ve received so far and are awaiting the time when they can travel to Edmonton for her transplant.