The Hartley Hooligans: A Glimpse Into Microcephaly

A mother's journey with the condition that affects two of her children

With the current media buzz about the zika virus and microcephaly, Gwen Hartley, from the blog "Hartley Hooligans" gives readers an insight into her experiences of having two children with microcephaly.

Gwen Hartley married her high school sweetheart Scott and had three children, Cal, Lola and Claire who are 17, 14 and 9.

"Lola and Claire happen to have extra superpowers meaning that they both have microcephaly," Hartley said.

Their first child, Cal, entered the world without any difficulties. Their next child, Claire, was born three years later after a normal pregnancy and delivery. She was immediately diagnosed with microcephaly, a condition meaning small head.

Microcephaly is a very broad condition. It ranges from children who have extremely small brains, causing their heads to appear to be small, to those mildly affected. Some have no issues and others are not compatible with life.

The Hartley's decided to have another child after being told that there was a 25 percent chance for reoccurrence. The pregnancy was closely monitored by ultrasound.

Microcephaly was confirmed for their third child, Lola, after the 22-week mark. Hartley and her husband were initially devastated, but now look back and realize that she is getting the best of both worlds.

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"Our life is still our life," says Hartley. "It wouldn't be my first choice for my child to be more physically and cognitively developed, but at the same time there's things that she [Lola] can do that she would not do if she were typical."

People unfamiliar with microcephaly might never guess the dynamic personalities that those with the condition actually have.

Hartley describes Claire as a "typical middle child." She is laidback and easygoing, said Hartley. Despite her usual mild persona, Claire does possess the sassiness of the typical teenager in her own way.

When asked to watch her younger sister, Claire often makes faces at her mother.

On the other hand, Hartley describes Lola as the feisty baby of the family that wants to be the center of attention.

Hartley also accidentally found that Lola is a fan of the television show, Say Yes to the Dress. Hartley wonders if her daughter would be the type of child who enjoys playing dress up if she were typical.

Hartley admits that she feels torn about the massive attention the media is placing on the virus due to the link between microcephaly and the zika virus.

She recalls celebrating Microcephaly Awareness Day for years without anybody ever knowing about the condition or focusing a lot of attention on it.

Despite this, Hartley is thankful for the media exposure raising the awareness and help for families dealing with the issue not received in the past.

An online community on Facebook, consisting of other families dealing with microcephaly, have supported Hartley throughout her journey.

She characterizes these families as warrior moms, dads and caregivers who are so fiercely in love with who their kids are. The type who would go to the ends of the earth to help their children optimize their lives. She finds these actions very inspirational.

Hartley says the Facebook community has been a true lifeline for her and vice versa. While she has met many parents of the group in person, she feels as if she personally knows them because of their support through the many difficult times.

Hartley can relate questions or concerns about any of her children to the group. They can relate in a way that people with only typical children cannot.

"They are my go-to people," she said.

In May 2015, Hartley wrote an open letter to families who just had children with special needs, due to the response she was receiving from her blog. Similarly, she spoke about what she would say to mothers who found out their child was diagnosed with microcephaly.

"I want them to understand that life is so joyful and so happy and so positive and that these kids are gonna help them love on such a deeper level than they ever even thought possible," she said.

Hartley described the struggles of thinking, "Why me?" in her situation, but advises mothers to still trust their hearts and motherly instincts.

Although she realizes from her experiences that doctors hold the best intentions, nobody knows what the future holds for their children. She felt frustration when hearing about others coming to her for advice because doctors told them that their child would not be able to live up to a certain age or be able to walk.

"I'm seeing these kids walk now and I'm seeing these kids far outlive these prognoses and it's so limiting. I just don't want these moms to feel like it's the end of the world, like I felt in the beginning."

While it hasn't always been easy for Hartley, she describes the gratitude she feels about her family and encourages families with children who have the condition to believe in themselves.

"Claire and Lola have made me a better me and I would say Cal made me a better me also. I am so grateful to all three as their mom," she says. "These parents are gonna do great."

Reach Staff Reporter Gabriela Fernandez here.