Tuesday February 02, 2016

Mother of two daughters with microcephaly and the deep bond they share

Gwen Hartley with her daughters Lola, 9, and Claire, 14.

Gwen Hartley with her daughters Lola, 9, and Claire, 14. (Gwen Hartley)

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Gwen Hartley is intimately familiar with microcephaly. Two of her three children, Claire and Lola, were born with the condition.

A lot of people will just come and really just need to touch our children . . . They compare them to the closest thing to angels that they've ever experienced.
- Gwen Hartley, mother of two daughters with microcephaly

She understands the experience of parents who've recently found out their children have microcephaly, likely connected to the Zika virus. She wants them to know her girls have brought her enormous joy.

"It's seriously one of the deepest bonds that I have in my life right now, my connection with my girls," she tells As It Happens host Carol Off. "I think it's just made me the best version of me."

Hartley family

The Hartley family, from left to right, Claire, Gwen, Cal, Scott and Lola, with their dogs. (Gwen Hartley)

Doctors predicted that her daughters wouldn't live past the age of one. Now Claire is 14 and Lola is nine. Hartley writes about her family's life on a blog called The Hartley Hooligans.

Along with microcephaly, the girls have dwarfism, cerebral palsy and problems with their bones and joints. They can't sit, crawl or walk on their own.

When people encounter Claire and Lola, their reaction is often extreme, says Hartley. Some stare or point. And others are drawn to the girls.

Claire Hartley

Claire Hartley's mom describes her as easy-going and sweet. (Gwen Hartley)

"A lot of people will just come and really just need to touch our children, which is kind of strange, but they'll say, 'Can I please hold your daughter?'," Hartley explains. "They compare them to the closest thing to angels that they've ever experienced. That's been really touching."

Hartley and her husband, Scott, didn't know that their older daughter, Claire, had microcephaly until after she was born. When Hartley was 26 weeks pregnant with Lola, doctors confirmed the baby had microcephaly.

Lola Hartley

Lola, 9, is the feisty one, her mom says. (Gwen Hartley)

"I have absolutely no regrets," says Hartley. "She was, literally, exactly the child we were supposed to have in our lives."

Some people in Brazil want to see the country relax its abortion laws because of the spike in babies born with microcephaly. Hartley says everyone faced with the prospect has to weigh their own choice.

"No doctor can tell you exactly what the future holds for your child. Only your child can show you that," she says.

"I would tell these families that you can have a beautiful, perfect relationship still, even with a child that has microcephaly. I know that some situations with microcephaly are more serious and some are more mild and I don't know any of them who don't bring their families great joy."