Gwen Hartley has stories to share about raising two daughters with microcephaly, the condition that has been linked to the mosquito-carried Zika virus. Now that the World Health Organization has declared Zika an international health emergency and many affected countries have advised that women not get pregnant, this mom of three is talking about her own experiences with microcephaly, and she says of her family, “We are all happy. We love our lives.”
Both Hartley daughters — Claire, 15, and Lola, 10 — have the small heads and brains characteristic of microcephaly, and they also have dwarfism, spastic quadriplegia cerebral palsy, and epilepsy. The Hartleys had no idea their first daughter, born after son Cal, now 17, was at any risk for the condition (which her doctors surmise is genetic) until she was born with a small head.
Despite doctors saying Claire would not make it past a year, the baby girl grew to be a happy, energetic child. She couldn’t speak or walk or sit upright, but by the time she reached 5, the family felt ready to have another baby. Gwen — a former teacher turned stay-at-home mom in Kansas — got pregnant again in 2006; at the 26-week sonogram, doctors gave her the news that this daughter too, named Lola, would have microcephaly.
“I remember crying for a day or two straight, trying to make sense of why this was occurring a second time,” Gwen wrote on her blog. “Why couldn’t Lola be born without a disability?” Big brother Cal, who already doted on Claire, asked questions about Lola and her health. “I could not assure him that she would be OK, but I told him that we just needed to pray for her,” wrote Gwen. “He said, ‘Mom, I just want to know her … no matter how long she’s here.’”
Cal with little sister Lola in 2006. (Photo: The Hartley Hooligans)
The Hartleys have been raising all three children with this spirit — they are making the most of the life they have and finding joy day by day. “This is the baby I’m supposed to be a mom to,” Gwen told the Chicago Tribune.
With Zika in the news, Gwen has been getting more visitors to her website, the Hartley Hooligans. “Part of me is grateful for the awareness of something we’ve been dealing with for 15 years, part of me feels sad for the families because I know what they’ve been through, twice. It’s been really emotional,” Gwen said. “At the same time, I know the joy that can come from having these kids. I wouldn’t purposely want another child to be affected, but I’m happy that they’ll know what I know. I would not have chosen it prior to my girls, but I didn’t know what I was missing out on.”
Mother and daughters, September 2015. (Photo: The Hartley Hooligans)
This mom hopes that she can inspire parents who have children with microcephaly — and there are resources on her site — but it’s tough to hear the media reports on the condition her daughters have. “They called it a ‘terrible’ birth defect,” Gwen said. “I don’t look at them as having terrible birth defects. I look at them as gorgeous. To me that is not a horrible, hideous birth defect. It’s no less beautiful to me.”
Gwen says that she knows their family is “not ‘the norm,’” but she maintains that they are happy just the way they are. “We feel the pity and the judgment, we hear the comments, questions, and remarks, and we see the stares, elbow nudging, and sheer surprise — and none of this matters to us, because WE LOVE OUR LIFE,” she wrote. “We love our three children, feel blessed by each unique child, and wouldn’t change one thing about our life or what we’ve been through. We only wish everyone could feel what WE feel on a daily basis.”
Top photo: The Hartley Hooligans