Haylie

Like father, like daughter – a father’s medical history reveals how to save his daughter’s life.

“Both Mike and our daughter, 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, placed on a continuous positive airway pressure (CPAP) machine and phototherapy after doctors diagnosed her with respiratory distress and jaundice.

Mike and Jayme knew something further was off with their newborn when she was unable to stay awake or drink more than 1-2 ounces of milk at a time.

After eight long, excruciating days, one of Haylie’s doctors noticed Mike had a congenital disorder called Hirschsprung’s Disease (HD). A specialist named Dr. Retrosi 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, so it will swell with blocked stool. This can cause terrible discomfort, with symptoms including swollen belly, constipation, vomiting and reduced ability for the child to thrive.

“When we first got the call with the biopsy results confirming Haylie had HD, we were of course sad and scared,” says Jayme. “But we were also slightly relieved because we knew, or at least we thought we knew, because of Mike’s experience with HD, that HD was treatable.”

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 named Dr. Wiseman 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.

“I burst into tears and so did Mike. I remember being so scared and not knowing what this meant for Haylie and her future,” says Jayme.

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.”

Haylie’s family also hopes for continued research surrounding Hirschsprung’s Disease and they have become donors themselves, hosting fundraising events and starting a family support network for families, patients, and caregivers to connect.

“It is extremely important to continue to educate and bring awareness to HD and to continue fundraising for researching for a cure,” says Jayme.

“On behalf of our family, I want to thank all donors who support Children’s Hospital and Children’s Hospital Research Institute of Manitoba.”