Gwen Hartley’s 19-week sonogram was normal. Her baby girl, her second child, was going to complete her storybook life. She’d married her high school sweetheart, they already had a healthy son, a house and a dog.
When Claire was born, Hartley looked adoringly into her daughter’s big eyes and remembered thinking that she’d forgotten how tiny a newborn’s head was. Then the doctors whisked her baby away. Something was wrong. Something that couldn’t be fixed.
After a series of misdiagnoses, the Hartleys, of Kansas, were told Claire had microcephaly, a serious birth defect that causes babies to have extremely small heads and brains, and, in her case, made it unlikely she would live beyond a year. Almost five years later, Claire was defying the odds and, although she couldn’t speak or walk or even sit upright, she was a happy and vibrant child. The Hartleys felt ready to get pregnant again. Rounds of genetic testing had not revealed anything to suggest Claire’s microcephaly was anything but an anomaly.
Then, at their 26-week sonogram, the doctors told them their third child’s head was too small, five weeks behind what was considered normal, and that she certainly also had microcephaly. Hartley remembers her first impulse was to laugh, then she and her husband, Scott, broke down and sobbed.
Until recently, the universe of people who understood microcephaly was limited to the small community of families living with children born with the condition. There are about 25,000 children with it in the United States. But now thousands of women in Brazil reportedly have babies diagnosed with the birth defect, and it has been linked to the also rare mosquito-borne Zika virus. The World Health Organization has declared Zika an international health emergency. Women in affected countries have been urged not to get pregnant.
Claire is now almost 15 years old, and her little sister, Lola, is almost 10. For the first time in their lives, people are paying attention to their condition, and it is terrifying the public. And that’s been extremely painful for Hartley.
“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,” Hartley, 41, said in a phone interview. “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.”
For the first year of Claire’s life, Hartley said, she and her husband lived in a state of perpetual panic and sadness. The vision of their perfect life had been shattered, and they had no idea how long they’d have their baby girl. But Hartley’s priorities shifted in those 12 months. Perfect was in the eye of the beholder, and to her, she still had the perfect family. She was going to stop mourning the life she didn’t have and celebrate the one she did.
When Lola was diagnosed, some of those negative thoughts seeped back. Knowing the life expectancy of these children was still short, she worried about how she would bury two children someday. Recalling these feelings now, Hartley started to cry. “It’s hard to think about that,” she said, her voice catching. But she doesn’t let those fears stay around too long.
“This is the baby I’m supposed to be a mom to,” she said. “I would be missing out on a gift that had been given to me.”
Claire and Lola have severe forms of microcephaly coupled with other serious health complications. They both have dwarfism, spastic quadriplegia cerebral palsy and epilepsy.
But they still have traits of girls their age. Hartley said Claire is a typical teenager who can give her some attitude and a little side eye. Claire is working on raising her arm and learning to crawl. Lola can make choices with her nose. She will sit on the edge of someone’s lap and lean forward and tap her nose on an object in front of her.
“She’s learning that she has a say in this world,” Hartley said.
A few years after Lola was born, Hartley, who had been an elementary school teacher, but chose to be a stay-at-home mom after her son was born, decided to start a blog. “The Hartley Hooligans” is filled with stories and pictures of her family and their daughters’ development. The posts are funny, poignant, raw and honest.
In a recent post, she wrote about how she’d dreamed Lola could walk. Once, those dreams would have left her with a longing for all she couldn’t have, she wrote, but there was a peace to this one.
“It felt a little bit like a fast forward of our lives … and as hard as it is for me to say this (I almost don’t even want to go there), it almost felt like Heaven — how I imagine it will be when we reunite someday on the other side,” she wrote. “I was able to see my little girl in such a different light. I know her heart inside & out already, but seeing her explore her world & delight in the little things felt like a lifetime worth of happiness condensed into one breathtaking moment.”
Since Zika made headlines, she has noticed an increase in visits to her blog. She hopes she can be a source of hope and inspiration for parents who are afraid.
“They called it a ‘terrible’ birth defect,” Hartley 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.”
That people would look at her children and say, “Let’s never let this happen to anyone ever again,” is a “little bit hurtful,” she said.
Of course, that’s not to say every day is easy. Recently the local school district mistakenly sent her a report card for Claire. When she opened the attachment, it was blank. It was a reminder that her eighth-grader can’t go to school and get a B in math.
But she still feels blessed with the life she’s been given.
“I’m sad they have to go through this, but they have it, so you can optimize the heck out of that kid’s life,” Hartley said of other parents whose babies have microcephaly. “We are all happy. We love our lives.”
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