This is What It's Like to Live with the Disease Linked to the Zika Virus

From Redbook

Gwen Hartley, a stay-at-home mom based near Wichita, Kansas, had no reason to think she was at risk to bear an unhealthy child. She was 26, she already had a healthy two-and-a-half-year-old son at home, and she had no history of a genetic disorder in her family.

When she gave birth to her daughter, Claire, she was thrilled to bring a new addition to the family.

“Claire was darling,” Gwen says. “She was so small, and her little hands were shaking. But she was perfect.” Her size did trouble doctors though, who said she would need extensive tests. After three anxious months, the doctors would diagnose Claire with microcephaly, a disorder where a child develops an abnormally small brain and other complications in the womb. First, doctors told Gwen her daughter would have severe disabilities, but she would live to be 40 and would even be able to walk. Then, they reversed course, saying that the severity of her microcephaly was stronger than they had initially imagined, and she was showing a failure to thrive. They told Gwen she should get ready to say goodbye to her precious girl.

“They told me I should emotionally disconnect as much as I could, because she wasn’t going to live through the year,” Gwen says. “Well, I did the opposite. As a new mom, I knew I could do it. She deserved a chance to live, and I knew that doctor’s advice was wrong. Scott and I knew we could figure it out as parents that loved her so much. We decided we were going to optimize her life, and she is going to do awesome. We decided we were going to rock this.”

In the past week, microcephaly has gone from a rare birth defect to a major international health crisis. Typically, around .1 percent of babies develop it in United States-with genetic factors, exposure to toxic substances, and certain infections considered to be the primary causes. But since it’s been linked to rapidly spreading mosquito-driven Zika virus, it’s become a real threat to women around the world. In Brazil, more than 4,000 children have been diagnosed with microcephaly since October of 2015. And health experts are concerned enough to declare an international emergency: the Zika virus has spread to more than 20 countries, including the United States, where one woman may have developed it through sexual contact with someone who was infected.

Government officials in Colombia, El Salvador, and Guatemala are so afraid of microcephaly, they just recommended that women avoid having children for two years until more studies can be done. And according to Dr. Laura Lanski, the chief of sexual and reproductive health at the United Nations Population Fund, women who hope to get pregnant should avoid Latin America and other high risk areas or take very careful precaution to block mosquitos if they travel to one. For those who don’t wish to get pregnant, “Condoms, emergency contraception, and other birth control is especially important,” she says.

Life with Microcephaly

For Gwen, who has lived with microcephaly for almost 15 years, her daughters Claire and Lola are not the victims of a health scare, a tragedy, or something to be feared. They are a profound blessing that has changed her life. The girls have been diagnosed with dwarfism, cerebral palsy, visual impairment, and several eating challenges, but that doesn’t phase Gwen.

Doctors first recommended that Claire follow an intense drug regimen to control her daily seizures and vomiting, but Gwen wanted to try something different. “We put her on a organic diet, with plenty of minerals and vitamins, we learned what her tiny body could tolerate, like avocado, goat’s milk, and other high-quality fatty foods.”

The teenage Claire Hartley will likely never walk, speak, grow more than three feet tall or weigh more than 25 pounds or so. She’s visually impaired and communicates with her parents by tapping her head or using a sensory input system. But she definitely has a rebel teen personality.

“She sneers when I try to take her picture and only smiles when I beg her too,” says Gwen. She also loves watching her brother Cal play basketball and listening to Eminem tracks, signaling with head taps whether she would rather hear a song, or story, or just be left alone.

For Gwen, cradling her daughter in her arms, and learning how to interpret her needs and hear her voice filled her life with joy, family, and a sense of purpose.

“At first, we were too scared to think about having more kids. But then, she turned four, and Cal was six and a half, we knew we wanted a third child.”

When Gwen was pregnant, she knew there was a 25 percent chance her new daughter could be sick too. Even though extensive genetic testing hadn’t found the root of Claire’s microcephaly, they still assumed it originated with a hidden gene mutation. Gwen was scared to learn whether her daughter, whom she’d already named Lola, would also have microcephaly or would be able to survive the birth. When she got the devastating diagnosis around 26 weeks, she cried for days. Though Gwen does work with a part-time caregiver, she feeds Claire through a tube and tends to her various challenges, including sleep issues, visual impairment, and frequent seizures.

Her doctor told her she didn’t have to “do this again,” but it was her 7-year-old son Cal that affirmed the decision she’d already made in her heart.

“He said, ‘Mom, I just want to hold Lola, even if it’s just for a little bit, even if it’s just for a day,” Gwen says. “I was so grateful to hear his perspective. I knew we had all the support, family, and resources we needed to make life great for Lola.”

Gwen has reached out to a special lab several times to do a deeper investigation into the root of her daughters’ microcephaly, mainly so she can learn if her son, Cal, could be a genetic carrier of the disease. But Cal put a stop to her search.

“He said, "Mom, I don’t care if I have a baby like Claire or Lola. I love them,” says Gwen.

Advice for New Moms Living with Microcephaly

“New moms out there need to know they will have unanswered questions, and they are going to feel up against the wall,” says Gwen. “But they can trust their heart. I write a letter to Claire’s first doctor every year around her birthday. I remind him that his prognosis was wrong, and I tell him to quit underestimating the strength of these kids that are fighting every day to be here. Shockingly, he never responds,” says Claire, laughing.

Claire’s family has a strange and playful sense of humor, something you can check out daily on her blog, The Hartley Hooligans. For the family, keeping in touch with their personality and connection makes their life more deeply joyful.

“In the beginning, I was crushed,” says Gwen. “I’m sure these moms in Brazil are feeling that way. But if you open your mind enough, you realize your whole life is in preparation for this moment, and this moment will make you better. I don’t think I would have hung out with the me before Claire. I was so shallow. All I cared about was that I have this awesome husband, this awesome house, and an awesome kid. Now, I am so glad I’m not that Gwen, because I took so much for granted. I’m glad the girls forced me to see the blessings I already had.”