The Hartley siblings: From left, Claire (14), Cal (17), and Lola (9). (Courtesy: The Hartley Family)
Gwen and Scott Hartley were already parents to their 2-year-old son Cal when they welcomed daughter Claire Elise in 2001. Gwen had a normal pregnancy with Claire, and a sonogram at 19 weeks showed her baby was developing normally. She was delivered full term without any complications at a hospital close to their home in a suburb of Wichita, Kansas.
"When she was born I said, 'Gosh you forget how tiny their little heads are,'" Gwen told FoxNews.com. But doctors also noticed Claire’s small head and whisked her away for testing before Gwen’s OB-GYN told the Hartleys there might be something wrong with their daughter.
"In true Gwen fashion I said, 'Well, we’ll fix it,' and he said, 'I'm not sure we can,' and that was my first reality check," Gwen said.
Local doctors concluded after three months of testing that Claire, now 14, had the same prognosis as someone who has Down syndrome— she would likely live until her 40s or 50s, and would need a variety of therapies but be able to walk and talk. It was hard for the parents to hear but manageable.
But when the Hartleys went to see an expert in Chicago, he informed them that Claire had been misdiagnosed— and despite their best efforts— likely would not live past age 1. He informed the Hartleys that their daughter has microcephaly, the birth defect linked to Zika virus, but Claire’s condition is not related to the infection. Doctors also diagnosed her with simplified gyral patterns (MSG), spastic quadriplegia, cerebral palsy, epilepsy, scoliosis, and cortical visual impairment (CVI). Claire also suffers from severe reflux that it made it difficult for Gwen to feed her.
"It was hard enough for the first diagnosis, and then when you hear the second one, I was almost begging for the first," Gwen said.
Thousands of cases of microcephaly have been reported in Brazil and the Americas recently amid an outbreak of the Zika virus. As researchers scramble to determine a possible link between the virus and the birth defect, women are being told to delay pregnancy in some areas while pregnant women in the U.S. are being advised to avoid traveling to afflicted areas. There is no known treatment, nor is there a vaccine.
"When is Jesus coming for Claire?"
Gwen described feeling powerless at the time, and having not only to process the diagnosis as parents, but also try to explain it to a toddler anxiously waiting for his sibling at home.
"He would wake up and say, 'Mom, is Jesus coming for Claire today? When is Jesus coming for Claire?' and I didn’t even know the answer. How was I supposed to help a 2-and-a-half-year-old understand that?" Gwen said.
The Hartleys prevailed; they sought counseling in the beginning to help process what their new lives would entail, and Gwen learned to keep a bowl nearby when feeding Claire in case of any reflux. They stopped stressing over every cold and began to rely on their parenting instincts as they did with Cal. It wasn’t until Claire was 3 that she would be fitted with a feeding tube after a hydration scare.
When the family felt settled into their routine and ready to welcome another child into their lives, they were told that the chance for microcephaly reoccurrence was 25 percent. Doctors also hadn’t been able to detect which of Scott and Gwen’s genes triggered microcephaly in Claire, so the Hartleys were confident in their odds. Gwen soon became pregnant with Lola, and had regular sonograms beginning at six weeks. At the 22-week appointment, doctors detected Lola’s head measurements were two weeks behind regular development, but they reassured Gwen there was still time for her baby to catch up. At 26 weeks, the sonogram showed Lola’s head measurements were five weeks behind.
"Before they even told me, I knew. I knew it instantly when I saw that picture," Gwen said. She described the moment as an out-of-body experience and that she and Scott couldn’t believe it happened again.
"We were bawling within five to 10 seconds, a minute, I don't even know," she said. "How are we going to do this? It’s real, this is happening, this is our lives. We are going to be different people now."
The grieving process for the family this time was different because Gwen was still pregnant at the time of diagnosis. However, questions remained, and not many had answers. Doctors weren’t sure if Lola would be better or worse off than Claire or if she would be smaller or bigger. Some dropped off the team because they felt inadequately educated. Others told Gwen to remember she had options, but those were never on the table for her.
"They said, 'You don’t have to go through with this again if you don’t want to,'" Gwen said, adding that her response was, "But I love her, I wanted her for years, she's moving in my tummy right now, she’s virbrant."
Her fears were further quelled by Cal, then 6, who told his mother that he "just wants to know Lola."
"It was like, he's right, and that’s all there is to it. We need to know this little girl, this is the little girl who was chosen for us— she has been everything we wanted and more," Gwen said.
"I can't imagine a life without them"
Lola was born one month premature on April 28, 2006. The Hartleys decided to forgo all of the testing Claire was subjected to, including those that would have been conducted immediately after birth. Gwen said they decided to optimize the health she had rather than find out another test result that they couldn’t treat or fix. Neither of the girls’ bodies can handle medication; even for the seizures they both suffer daily.
Each of the Hartley girls has their own personality. Claire, like a typical teen, doesn’t like rising in the morning for therapy, while Lola has developed an affinity for Cash, one of the family’s whippets. Each day the house is buzzing with physical, occupational, speech and vision therapists as the girls do not attend school. They were both fitted with glasses last summer as they were diagnosed with cortical visual impairment and were found to be nearsighted.
Each is advancing in their own way, with Lola working on her vision and awareness, and Claire working on her physical strength. Lola has started looking up to see the face of the person holding her, smiling at who she knows and making choices using her nose. Claire is showing a desire to want to stand on her legs and get into a crawling position. The Hartleys are in the process of getting her a walker, which they aren’t sure if she is ready for, but are interested to see if she has a desire to use.
Although both girls are nonverbal, the family includes them in every conversation. Gwen is sure to give them choices between activities or food and clothing, and using their bodies to answer. For example, Gwen will hold her hands next to the temple area of Claire’s head and designate each hand to represent a choice. She then asks Claire which she would rather have, and waits for Claire to turn and touch the hand hovering on each side. It all represents being able to give the girls a little bit of power over their own lives, a choice in the world.
Gwen and Scott have surrounded themselves with doctors and therapists who support the girls on their journey, and who are willing to think outside of the box for two girls who don’t fit the typical patient mold. Each year on Claire’s birthday, Gwen sends the doctor who gave her less than a year to live an update on how well she’s doing. The girls have taught the family to love in ways they didn’t know possible. While Gwen said she wouldn’t have wished for two children with microcephaly and pronounced disabilities, she doesn’t like the person she was before they were born.
"I'm just so grateful that I was given all three of my kids exactly the way that they are,” Gwen said. "I can't imagine a life without them, and I hope I don't have to for a very, very long time."
The girls have also had a profound impact on their brother Cal, whose own outlook for his future children has been shaped by his love for the girls.
"I remember when we were doing the genetic testing, he was like, 'Mom I don't care if someday I have kids like Claire and Lola, it's OK because I love them,'" Gwen said, adding that while she isn't sure she would choose that life for her son, she's glad the girls have had that effect on him.
"It lets you know you are not alone"
Gwen also has advice for new parents of a child with microcephaly, which wasn’t immediately available to her when she had Claire. A lot of it is based on remembering to rely on parenting instincts that she put on the backburner.
"They don't have any idea how strong their child could be, and how strong they will be until they are actually living this life," she said. "I would want them to know that they can totally do this, I think that's something that I lacked in the beginning— whether it was somebody else's belief in me, or my own belief in myself. They can do this, they're going to be totally different people, their lives are going to be more rich and full than ever."
She said she often found herself in between decisions, which wasn't something that happened when she had Cal. She learned to rely on her support group as well as her own gut feelings when it came to the care of her child. Gwen is also a member of online support groups, which started on Yahoo! Groups before transitioning over to Facebook. She said hearing stories from other parents about what her girls are going through helps to give her strength.
"There are people out there who have been through it all and been through something similar to what I have been through. It feels good to be able to ask questions— it at least gives you ideas," she said, adding, "It lets you know you’re not alone."
"The special-needs communities are some of the coolest, most fierce moms and dads and caregivers that I have ever met," she said. "I feel honored to be a part of these communities."
Gwen also maintains her family's blog, where she provides resources for other parents of special-needs children, whether it's dietary or informational websites. She regularly posts pictures and updates of her three children, careful not to sugar-coat any of the emotions.
"Within our family of five, it’s strengthened us to a point where together, we can accomplish anything. The highs and lows that come with this life, it’s the extreme in every way," she said. "It's extreme love and it's extreme sadness, and having these extremes makes us more resilient people."
"I love the way our family has changed as a result of having our girls, and from having Cal," she said.