Miracle children

Parents share their stories of caring for kids with significant disabilities.

By Lisa Bendall

This story was originally titled "Miracle Children" in the January 2009 issue. Subscribe to Canadian Living today and never miss an issue!

This special time of year sparks warmth and delight in families across the country. For many of us, it’s a season linked to miracles. Whether we believe in the birth of Jesus, the story of Santa Claus or simply the incredible capacity for love and kindness in our fellow human beings, we are often inspired by hearing seemingly magical tales.

What better way, then, to honour this season than to share the stories of three truly beautiful children. All three of these little ones are living with significant disabilities. All have brought unbelievable joy to their families and hope into their homes. Even in their short lives, they have already taught astonishing lessons to those who know and love them.

These children are, in the true sense of the word, miracles.

David Sweeney 
Little David Sweeney is just coming up to his first birthday. But this handsome baby has already seized hold of a lot of hearts. There are the nurses in the neonatal intensive care unit who cheer his every milestone. And the dozens of people who write caring messages on his mom’s blog.

And then there’s David’s family in Humboldt, Sask., about 110 kilometres east of Saskatoon: his parents, Tracy and Brent; his brother, Daniel, 2; and his half-siblings, Jake, 13, and Lyla, 15. Although David has never spent a night away from hospital, he is very much a part of family life.

David was born in January 2008 at Saskatoon’s Royal University Hospital with a giant omphalocele, a severe birth defect in which the intestines and other abdominal organs protrude into the base of the umbilical cord. In David’s case, his intestines, and his spleen, liver and other organs were on the outside of his body in a thin sac of tissue. He also had a hole in his heart.

Prenatal ultrasounds showed a condition so critical that he was not expected to survive. “It was the ultimate worst horror of my life,” says Tracy. But David’s parents, while devastated, refused to terminate the pregnancy. “We were so far along, and the baby was already kicking.” They’d even picked out his name, after an uncle who died early in Tracy’s pregnancy.

Still, “We didn’t furnish a nursery. We never had a baby shower,” says Tracy. “They were just going to induce me and give him a warm place to die.”

Miraculously, David seemed strong enough at birth that medical staff and family members began to hope. He was hooked up to IVs, monitors and a breathing tube. His condition was still precarious. He was having difficulty breathing on his own, and he needed a series of surgeries to place his organs inside his abdomen.

But when it came to love, David already had all he needed. Tracy and Brent moved with Daniel into a nearby Ronald McDonald House so they could be with their baby around the clock. “I don’t actually see the omphalocele when I see him. I see his face,” says his mom. Their bond is tight. David often stops crying and smiles when his parents enter his room.

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