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Kansas family offers hope to parents of children with microcephaly

  • ASSOCIATED PRESS / JAN. 28

    Doctor Angela Rocha shows brain scans of a baby born with microcephaly at the Oswaldo Cruz Hospital in Recife, Brazil.

  • ASSOCIATED PRESS / DEC. 22, 2015

    In this file photo, Luiza has her head measured by a neurologist at the Mestre Vitalino Hospital in Caruaru, Pernambuco state, Brazil. Luiza was born in October with a head that was just 11.4 inches in diameter, more than an inch below the range defined as healthy by doctors. Her rare condition, known as microcephaly, often results in mental retardation.

To many, having a child with a birth defect called microcephaly might seem to be the end of the world. And so it did, initially, for a family near Wichita, Kan., that experienced it — twice.

But for Gwen and Scott Hartley, their two daughters. born with abnormally small heads and brains, are a source of joy.

Microcephaly recently has been linked with the virus Zika, which is causing alarm among health officials. Thousands of parents have been heartbroken in Brazil, where the mosquito-borne virus has been most active. It has the potential to spread to parts of the United States.

“My heart just goes out to those moms that are dealing with that,” Gwen Hartley said. “While I would not have chosen this for my children, and it’s definitely not something I would wish to happen, in our situation it has caused us to rise to the occasion. I think I have become a better person.”

Neither Claire nor Lola Hartley can talk. Claire has a feeding tube. The girls have other serious problems and require constant attention. Both have spinal malformations and Claire has cerebral palsy, epilepsy and cortical visual impairment.

Claire Hartley, 14, is about 3 feet tall and weighs 23 pounds. Lola, 9, is 2 feet tall and weighs 12 pounds. They have to be carried everywhere.

The Hartleys do not hide their daughters or shun attention. In fact, Gwen Hartley started a blog called The Hartley Hooliganson, in which she lightheartedly chronicles the daily challenges of caring for the two girls.

Her tone is light, with a sprinkle of salty language. She recalls forbidding the word “microcephaly” in the maternity room. Later, she boasts of her skill at “dwarf wrangling.”

The family has also posted video on YouTube.

“I feel like you can choose to view it as a really sad thing,” said Gwen Hartley. “I can list 50 reasons why it sucks. But I can list 1,000 reasons why it’s freaking awesome. They are cool, amazing, deep spiritual beings and I am so lucky to be their mom.”

Claire and Lola are aware of their surroundings and respond to love and tenderness. Claire has little or no hand dexterity, but she doesn’t know that she cannot grasp a ball. Lola is usually grasping a small rubber chicken.

Claire is easygoing and mellow, her mother said, while Lola is a feisty diva who demands to be the center of attention.

The Hartley’s first child, 17-year-old son Cal, was born without birth defects.

“I’m just so glad I get to experience the best of both worlds,” Gwen Hartley said, adding that some people feel sorry for her. “I say you guys have no idea. Every day I am so happy that I get to have another day with my girls.”

Babies born with severe microcephaly often do not survive long. Others live to adulthood.

The Hartleys were told that Claire would probably not live a year.

“My daughter is still here and she’s thriving and progressing and happy,” Gwen Hartley said.

Doctors believe genetics were the cause in the cases of Claire and Lola, but they have not been able to identify the gene or genes responsible.

Several viruses are associated with microcephaly. The connection between Zika and microcephaly is suspected but not proven. Although Zika was first identified in Uganda in 1947, there is no reason to think it was responsible in the cases of Claire and Lola.

Between two and 12 babies out of 10,000 live births in the United States have microcephaly, according to the Centers for Disease Control and Prevention.

Reported cases in Brazil jumped to about 4,000 last fall, compared to less than 150 in all of 2014. The new cases were clustered in areas where the Zika virus has also been spiking.

Gwen Hartley has been interviewed by several media outlets recently, including The Guardian newspaper and the BBC. It’s a new role for her and has been a busy week.

“I hope that maybe, in some small way, my testimony can help new mothers whose babies were diagnosed with microcephaly to feel less alone & afraid,” she posted on her blog.

She said she wished more people had been encouraging to her and her family in the beginning. Gwen Hartley said she would advise parents with microcephalic children, whether caused by Zika or not, to find strength in self confidence.

“No. 1, I would want them to know that they can so totally do this,” she said. “They’ve got to have a support system and have a (care) team that they’re comfortable with. The key is we listened to our hearts and I think these moms need to do the same. They know that child better than anyone else.”

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©2016 The Kansas City Star (Kansas City, Mo.)

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