Kansas Parents of 2 Girls With Microcephaly Share Joys, Struggles of Family Life

— -- From the very beginning, Scott and Gwen Hartley from Kansas knew there was something very different about their daughter, Claire.

“Literally she was born and there was a lot of commotion,” Gwen Hartley said.” I remember thinking what's going on? Why are there so many people in here?”

Moments after giving birth, Hartley's doctors told her something wasn’t right.

“I said, in true Gwen fashion, ‘well we’ll fix it,’” she said. “I mean, that was my exact words, well we’ll fix it and he's like I’m not sure you can.”

It took months to get a diagnosis: Microcephaly – a neurological condition in which babies’ heads and brains aren’t fully developed.

“We went and saw specialists,” Scott Hartley said. “They basically told us this is what's going to happen… she's going to be in and out of the hospital with pneumonia and she's going to be sick and you're going to lose her before she's a year.”

Claire is now 15 years old. In addition to microcephaly, She suffers from cerebral palsy, scoliosis, dwarfism and partial blindness.

“I mean good grief. They just keep throwing words at you and you're like okay, what does that mean?” Scott said.

Claire’s case of microcephaly is extreme, but it’s genetic and was not caused by the mosquito-borne virus, Zika, which has gotten a lot of media attention lately because recent Zika outbreaks have been connected to a global uptick of microcephaly cases, mostly in Latin America.

Complications from Zika range from mild to severe – from learning disabilities to seizures and impaired motor functions. In the United States alone, there have been reports of more than 1,000 pregnant woman infected with Zika, enough to prompt public health alerts and a search for a vaccine.

The Hartleys say the recent media spotlight on microcephaly is both good and bad. On one hand, it brings awareness to the condition, but on the other hand, they say the Zika scare has created a negative stigma around microcephaly.

“The media has just created monsters out of this,” Scott Hartley said.

“That’s my baby I love,” Gwen added, and now it’s like “oh my God, let's please try to spray the entire country with pesticides so that nobody gets bit by a mosquito so that nobody can have to have a kid like that.”

Over the years, Claire has conquered big milestones. Just this past summer, Gwen said her daughter took what she described as her first steps ever.

“Claire was walking across our living room,” she said. “I could not just quit crying, it was so awesome. It was so crazy. I just didn’t think she could pick it up so quick.”

As Claire grew up alongside her older brother Cal, who does not have microcephaly, Gwen and Scott started to think about having another baby. Despite not having a formal diagnosis for Claire, doctors told the Hartleys the odds were on their side to have another healthy baby.

“It was sort of a leap of faith,” Gwen said. “It wasn’t one that we didn’t plan out and think through.”

The Hartleys did get pregnant a third time, but 26 weeks into Gwen’s pregnancy, their worst fears were confirmed – a sonogram showed their new baby had microcephaly. It was their son Cal, who was just 7 years old at the time, who helped them with the shock.

“I remember Cal saying, ‘Mom, I just want to know her,’ Gwen said. “The best piece of advice I could have gotten at that very moment.”

Like Claire, the Hartleys said doctors gave Lola a bleak prognosis. Now she is 10 years old and Lola, like her sister Claire, has managed to defy the odds.

“There's been at least five to six times with Lola where I thought we could lose her,” Gwen said. “Lola has pulled through… I don’t know whether I could have made it through.”

“They really want to be here,” Scott added.

Cal is now a 17-year-old high school senior and class president, who is hoping to earn a college basketball scholarship. He said he always felt equal to his sisters.

“They have a lot of needs that they need help with and they can’t always do everything,” he said.

Neither of the girls can speak and are fed like newborns. Claire gets all of her food through a feeding tube. They sometimes have a caregiver helping them at home during the day. Teachers and therapists also come by to work with the girls nearly every day. Overall, their costs are covered by the county or Medicaid, with some help from insurance.

Since the girls are so fragile, they can't take any medicine or undergo surgery.

Gwen and Scott agree that the stress of making sure their kids are taken care of has been hard on their marriage and their own health.

“I do worry and I am stressed,” Gwen said.

Despite all of the worry, Gwen and Scott remain forever positive and upbeat about their family.

The Hartleys use a sharp sense of humor to deal with the stress. She has even called her family a "walking freak show." Gwen shares videos online, making jokes about their family, and said the family blog she maintains, called “The Hartley Hooligans,” is her “lifeline.”

“People are like, ‘quit making fun of your child,’” she said. “I’m letting her personality show through. I’m giving her a chance to not just be somebody you want to put in a box as a vegetable.”

Gwen shares moments of the girls that others might take for granted – like a video of Lola drinking from a water fountain.

“It's like the most normal thing she can-- she's ever done,” Gwen said. “She's a little tiny thing.”

The girls have had an enormous impact on the family. Scott, who owns his own glassblowing studio, says he has learned not to worry too much about the future.

“I was a completely different person before I had Claire… very self-centered, just materialistic,” he said. “[Now] it's completely different. The little things in life mean way more to me and that’s the life of having a kid with special needs.”

“The girls are our little teachers,” Gwen added. “We try to just make each day the best we can make it.”