Children’s Health Foundation, a member of the Children’s Miracle Network.
Tara Jeffrey
Little Lilah Taylor is a face of hope.
She’s been chosen an ambassador for the Children’s Health Foundation, a member of the Children’s Miracle Network, dad Steven Taylor said of his almost-two-year-old.
“That means, raising awareness, collecting donations, participating in campaigns like ‘Smile Cookies’ with Tim Hortons, and other events," he said.
While developing in utero Lilah was diagnosed with gastroschisis. The birth defect of the abdominal wall means the baby’s intestines are outside the body, exiting through a hole beside the belly button. In Lilah’s case, not only her intestines, but her other organs (stomach, bladder, uterus) were also growing outside her body.
The Taylors travelled to London weekly for ultrasounds, and met with a team of doctors and surgeons.
“At 36 weeks her bowel started to tie off, and if that happens they have to remove part of the bowel. And that means more long-term problems,” said Taylor.
“They had to induce my wife right there. So when Lilah came out, all of her organs were hanging outside of her body.”
Doctors worked to put her organs in place. A week passed before the Taylors could hold their four-pound, 11-ounce daughter.
“They actually put her bowels in a bag and hang them over a pole over the incubator and it naturally goes in. Once it’s out about an inch, they do the final surgery to close her all up,” said Taylor. “Then, it was all about getting her to eat, pass food, etc.
“It was pretty intense stuff, for sure. My wife was so strong; it was amazing.”
The couple stayed at the Ronald McDonald House in London while Lilah spent 23 days in the newborn intensive care unit.
The experience was life-changing, he says.
“It was really humbling to be up there, to realize what we were going through wasn’t near as bad as what some of those families are going through,” he said. “I think sometimes people take it for granted — just having a healthy baby.”
Today, Lilah is a bubbly little girl with a bright future, and a big sister to one-month-old Ruby. She returns to London for regular check-ups, had one hernia surgery and may need one more.
Taylor, a local Re/Max agent, and his business partner, donate proceeds from every sale to the Children’s Miracle Network, which raises funds for children’s hospitals and foundations across North America, including London’s Children’s Health Foundation.
Along with Lilah’s role as ambassador, the Taylors will have the opportunity to visit and speak with families going through similar situations.
“We’ll be chatting with families at the Ronald McDonald House, letting them know that we’ve been in their situation,” said Taylor. “And letting them know that there’s a light at the end of the tunnel.”