Stefano’s stories: help kids get the best surgical care possible

November 2024

Every day at Children’s Hospital Foundation of Manitoba, we’re inspired by the families brave enough to share their stories to help and inspire others.

I want to introduce you to a family that will be together for the holidays, thanks to the dedicated teams at Manitoba’s only children’s hospital helping both a young girl named Haylie, and her father, Mike. 

“Both Mike and Haylie are alive today because of the knowledge and care we have received from specialists at Children’s Hospital,” says Jayme, Haylie’s mom.

When Haylie was first born, she struggled to breathe. She was rushed to the Neonatal Intensive Care Unit (NICU) at HSC Children’s Hospital to help her breathe. Mike and Jayme knew something further was off when Haylie was unable to stay awake or drink more than 1-2 ounces of milk at a time.

One of Haylie’s doctors noticed Mike had a congenital disorder called Hirschsprung’s Disease (HD). A specialist performed a biopsy and confirmed Haylie has the same condition.

With HD, a section of the intestine develops without nerve cells to stimulate movement through the colon. This can cause terrible discomfort, with symptoms including swollen belly, constipation, vomiting and reduced ability for the child to thrive.

When Mike was 36 hours old, he was airlifted from his hometown of Dauphin, Manitoba to Children’s Hospital in Winnipeg because his belly had become distended. He was diagnosed with HD, and a pediatric specialist saved his life by removing the affected part of his colon, which was a few centimeters long. 

But Haylie’s diagnosis was more severe. Haylie’s entire large intestine was affected as well as much of her small intestine. Jayme remembers the very emotional moment when they were told their baby was much sicker than doctors had expected.

Within the first two months of Haylie’s life, she needed emergency care at HSC Children’s three times. At two months old, she had surgery to bypass the affected intestines and divert waste to an ostomy bag.

Since Haylie’s diagnosis, she has had a total of 30 surgical procedures and has spent over 200 nights in Children’s Hospital. Doctors have tried many times to connect her small intestine with the end of her colon, but every time she encountered issues. Without the ostomy bag, she needed painful irrigations several times a day – which could last hours – and was unable to eat so needed to be tube fed for up to 23 hours a day.

After trying many different treatments from surgery to Botox injections to massage, in early 2024 – at the age of five – the surgical team put in Haylie’s ostomy bag again, and now she’s thriving.

Haylie embraces her ostomy bag and even has a “stomy bear” who wears a bag cover matching hers every day. She loves food and her family jokes she’s making up for lost time by eating as much as she can. Haylie also enjoys swimming, crafts and doing gymnastics with her sister, Jaedyn.

Haylie’s parents are grateful for the amazing care their family continues to receive at Children’s. They are thankful to donors who support lifesaving, specialized surgical equipment for kids like Haylie.

“Children’s Hospital is our safe place. When Haylie has been very sick, we know when we take her there, she will get the proper treatment.”

Right now, the surgical teams at Children’s need critical, life-saving equipment to look after kids like Haylie. On Tuesday, December 3 your donation will go even further to #ContinueCaringForKids. Thanks to Qualico and an anonymous matching donor your gift will have TRIPLE the impact. $10 becomes $30, $20 become $60, and so on.

Let’s make anything possible. Please donate on #GivingTuesday at goodbear.ca.