Transcript for Kansas Parents of 2 Girls With Microcephaly Share Joys, Struggles of Family Life
Long before the world was concerned about the effects of the Zika virus in newborn babies, the Hartley family was confronting microcephaly on their own. On a medical odyssey to bring comfort and quality of life to their two afflicted daughters. Here's my "Nightline" coanchor juju Chang. Reporter: From the beginning Scott and Gwen knew there was something very different about their daughter Clair. Literally she was born and there was a lot of commotion which I remember thinking, what's going on? Why are there so many people in here? Reporter: Moments after giving berth, Gwen's doctor told her something just wasn't right. And I said in true Gwen fashion, we'll fix it. That was my exact words, we'll fix it. He said, I'm not sure you can. Reporter: It took months just to get a diagnosis, microcephaly, a neurological condition in which babies' heads and brains aren't fully developed. What was your reaction? Gals just so much fear. It was really hard. We went and saw specialists. They basically told us, she's going to be in and out of the hospital with pneumonias and she's going to be sick and you're going to lose her before she's a year. Reporter: When you first meet Clair her appearance can be unsettling. Now 15, she also suffers from cerebral palsy, scoliosis, dwarfism, partial blindness. Good grief. They keep throwing words at you and you're like, what does that mean? Reporter: Like most cases of microcephaly, Clair's is genetic and was not caused by the mosquito-borne virus Zika. But the global uptick in microcephaly cases because of the Zika outbreak has helped raise awareness of the disease. Complicationses range from mild to severe. Learning disabilities to seizures to impaired motor functions to failure to thrive. In the U.S. Alone there have been reports of over 1,000 pregnant women infected bit mosquito-borne virus. Enough to prompt public health alerts and a search for a vaccine. But the hartleys say the recent media spotlight on the disorder is both good and bad. The media's just created monsters out of this. I mean, nobody would wish this on their kid. You're frustrated because it is painted as the bogeyman? Yeah. Oh my god, let's please try to spray the entire country so nobody gets bit by mosquitos so nobody would have to have a kid like that. Yet I'm greatful for the exposure and people say, does your child have microcephaly? You just used the word microcephaly! For 14 years it's like, she has what? Do it, Clair, you know what to do. Yay! Reporter: This summer Gwen captured what she says are Clair's first steps ever. Those are the moments you'll look back and go, wow. You know? This is -- this is a life worth living. You okay? Reporter: Throughout the years, as Clair grew up alongside her big brother Cal, doctors told Gwen and Scott the odds were on their side if they were to have a third child. It was sort of a leap of faith. I mean, it wasn't one that we didn't plan out and think through. You went in with eyes open? Yes. Reporter: 26 weeks into her pregnancy their worst fears were confirmed. I think we laughed about it. That was our first reaction. Like just shocked. I know that sounds cruel but it was like that. Can this honestly happen again? I think a lot of people would think about termination. That was an option for us, actually. Reporter: Yet it was their son, still quite young at the time, who helped his parents make the tough els choice of their lives. I remember Cal saying, mom, I just want to know her. My gosh. It takes my 7-year-old to be able to come to me and say -- With the wisdom. The best piece of advice I could have gotten at that very moment. The other argue is, well, you're saving a child a lot of suffering. Right. We've been told that to this day. I feel like everybody's kind of entitled to their opinion about that. And I would never judge another person for doing it. Do I ever question the decision? The answer is absolutely 100% no. I was given the baby I was supposed to have. You did so good, I'm so proud of you. Reporter: Like Clair, doctors gave Lola a bleaking proknows. Now 10 years old, she, like her sister, has managed to defy the odds. I bet you there's been five to six times with Lola where I thought we could lose her. And every time it's like -- she just continues to fight. I don't know whether I could have made it through. They're way stronger than I am. What do you mean by that when you say that? They want to be here. They really want to be here. How do you see their will to survive? You just feel it. The energy with her. When you hold them. You're not getting the words, you're not getting as many actions, it's all a feeling. It's this connectedness. Like a soul level. Reporter: That understanding is shared too by Cal, now 17 and senior class president. He's hoping to earn a college basketball scholarship. Did you ever feel like, they get all the attention? I mean, sometimes. They have a lot of needs they need help with. I was never really worried about that. You knew your parents had your back? Yes. Always. Can you say something? Reporter: As we spent time with the hartleys we were struck most by how they deal with their stress. With a sharp sense of humor. I hear your goal is to be bleeped. I want to be bleeped at least one Time. Did it work? Come on, guys. I think you just did it. Reporter: That laughter is the best medicine philosophy reflected in the videos and posts Gwen shares online with nearly 40,000 followers, calling her family the Hartley hooligans. You actually referred to it in writing as a walking freak show? Yes. Totally. I mean, I think that's how people view us. It's not something you see every day. Some people say, you're making jokes. I'm letting her personality show through. Giving her a chance to not just be somebody you put in a box as a vegetable, somebody who doesn't get it. Reporter: Gwen insists they do get it, even though neither girl can speak. Both are fed like newborns. Clair gets all her food through a feeding tube. On some days, Tracy Simms is their devoted caregiver. She's probably the best mom I know. She's awesome. She's a great best friend. If they didn't have her for a mom, you know, they probably wouldn't be here with us. I'm not going to sugarcoat the fact that I feel like there were times when it was hard on our marriage. I think there was times it's been hard on our health. Because I do worry and I am stressed. Reporter: Teachers and therapists come by to work with the girls nearly every day. Good girl, Clair. Reporter: Throughout all the hardship, Gwen says her blog has been her lifeline. Gwen loves sharing the girls' accomplishments, even the moments most of us would take for granted. Like the most Normal thing she's ever done. Good girl. Reporter: She's girls may be tiny but they've had enormous impact on this family. Scott, who owns his own glass-blowing studio, says he's learned not to worry too much about the future. I was a completely different person before I had Clair. Very self-centered. Just materialistic. And now? Completely different. The little things in life mean way more to me. The girls are little teachers. We try to just make each day the best we can make it. Reporter: For "Nightline" I'm juju Chang outside Wichita, Kansas.
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