Society

Mom of Two Kids With Microencephaly Speaks Out

“I don’t look at them as having terrible birth defects. I look at them as gorgeous.“

A mother of two children with microencephaly — the birth defect at the center of a worldwide panic linked to the mosquito-borne Zika virus — is urging compassion and understanding for babies who may be affected by the condition, rather than attempts at eradication through government-backed birth control and abortion programs.

In a poignant interview with the Washington Post, Gwen Hartley, whose two daughters Claire and Lola, ages 14 and 9, were born with microencephaly (Hartley also has a neurotypical son, Cal, who is 17) told the paper that the current international scare over microencephaly has been particularly painful for her family to watch unfold — especially as governments in some affected countries have warned women to avoid pregnancy altogether, and Brazil, the country at the epicenter of the crisis, has even begun discussion about relaxing the country’s existing abortion laws to allow parents whose unborn children show signs of microencephaly to undergo risky late-term abortions in order to prevent more live births of babies with the condition.

Hartley told the Post that it’s hard not to be be offended by the idea that someone would look at her daughters and say, “Let’s never let this happen to anyone ever again.”

“They called [microencephaly] a ‘terrible’ birth defect,” Hartley said. “I don’t look at [my daughters] as having terrible birth defects. I look at them as gorgeous. To me that is not a horrible, hideous birth defect. It’s no less beautiful to me.”

Microencephaly, which simply means “small head,” is a condition in which a baby’s head fails to grow to the normally expected size before birth. Depending on whether the child’s brain development is also affected, the effects can range from minimal to severe. Some affected children will have perfectly normal cognitive function despite their small head size, while others may suffer seizures, developmental delays, overall dwarfism, long-term mental handicaps and/or greatly shortened lifespans.

Hartley’s children are at the severe end of the spectrum, suffering from dwarfism, cerebral palsy and epilepsy. Neither girl can walk or talk, although Claire, at nearly 15, has recently begun learning to crawl, while her little sister, Lola, can indicate her preferences by tapping objects with her nose.

Hartley runs a blog, The Hartley Hooligans, where she shares personal stories about her family’s tribulations and triumphs and raises awareness about microencephaly and its related medical conditions. As public fears over Zika and microencephaly have risen, so has her blog traffic. Hartley told the Post she sees the situation as a mixed blessing.

“Part of me is grateful for the awareness of something we’ve been dealing with for 15 years; part of me feels sad for the families because I know what they’ve been through, twice. It’s been really emotional,” Hartley told the Post. “At the same time, I know the joy that can come from having these kids. I wouldn’t purposely want another child to be affected, but I’m happy that they’ll know what I know. I would not have chosen it prior to my girls, but I didn’t know what I was missing out on.”

In a blog post acknowledging the Zika scare, Hartley recently wrote:

“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. I certainly don’t have all of the answers regarding this diagnosis, but I want to help set their minds at ease however I can.”

“It is sad to me that microcephaly is being vilified in the media due to Zika, and I hope that the general public realizes that though this diagnosis would not be something I would have chosen, I am NO LESS BLESSED by having two daughters with this condition than if they’d been born typical. I am just as proud of my girls as I am of our neurotypical son, Cal.”

 To read the rest of this brave mom’s interview with the Washington Post, click here.