'We want our daughter home': Sask. family says there is no provincial funding for their baby to live at home
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 -- For almost four months, parents Morgan Hewitt and Ryan Magel have been travelling from Hanley to Saskatoon to be with their three-month-old baby, Briar Magel who is currently at Jim Pattison Children’s Hospital.
Briar was born on June 24 and at first everything seemed normal. Then the family went home to get settled in.
“We were home for about nine hours and then Briar continued to vomit so then we immediately brought her back to emergency and emergency had no idea what was going on and they did an X-ray,” Hewitt said.
The X-ray showed Briar had a blockage in her intestines and was admitted into the pediatric intensive care unit for surgery to remove the blockage. A PICC line was then placed.
“They tried to massage the blockage and as it didn’t clear they had another surgery,” Magel said.
Part of Briar’s bowel had to be removed for biopsy in order for doctors to find the cause.
“Those tests came back that it wasn’t Hirschsprings disease,” Magel said.
More tests were done and doctors were able to determine that Briar has MMIHS (Megacystic-Microcolon-Intestinal Hypoperistalsis Syndrome), a disorder that affects the muscles that line the bladder and intestines. There is currently no cure for MMIHS unless an entire digestive system transplant is done.
“It’s extremely rare gene defect. There are two genes that make up your bowels. One creates the muscles, the other one controls them. Briar doesn’t have the control so her bowels won’t function, her stomach, small intestine, large intestine, liver and bladder this all effects,” said Magel.
Briar then had more surgeries to have an ostomy bag and a central venous line.
“That’s basically what’s feeding her and keeping her alive,” Magel said
Now all the family wants to do is to bring Briar home before Christmas but they are unable to as the family was told the province currently has no funding for the TPN program for children. Without the funding, it will cost the family $100,000 for Briar’s medical supplies to be at home.
“She’s literally stuck in hospital right now because of lack of money in the budget. It costs more for her to be in the hospital than it would be at home. We will be trained to do everything, we just don’t have the means to pay for the equipment,” Hewitt said.
Hewitt has been unable to work as she will have to care for Briar and their two-year-old daughter. Magel said he is currently undergoing physiotherapy and receiving assistance through Saskatchewan Workers' Compensation Board.
“We’re driving into the city every day; we’re paying for parking monthly at the hospital. We also have a two-year-old at home that we have to find childcare for everyday so we can come to the hospital to see our other child since we’re not allowed to bring our two-year-old into the hospital. It’s very mentally and physically exhausting, draining. You can’t go anywhere, you can’t go outside or do anything, you’re sitting in a hospital room holding your child,” Hewitt said
The family has been trying to contact multiple levels within the government but she admits it has been difficult during an election.
“I even went as for to contact our prime minister,” she said.
CTV News requested comment from the government but did not received a response at the time of publishing. The family said they will keep pressing the government to be heard.
“We want our daughter home. We want Saskatchewan to be able to have their own at home TPN Program for rare diseases such as this,” said Hewitt.