Gwen Hartley has two daughters with microcephaly, a condition in which a baby's head is significantly smaller than expected. In some cases, the condition comes with brain damage and developmental delays. It has recently received widespread attention due to its suspected link to the Zika virus. But the mom of three has a powerful message regarding her family: Don't pity us.
Hartley and her husband, Scott, have three children: Cal,17, Claire,14, and Lola, 9. Hartley describes Cal as an awesome teenager and big brother with wisdom beyond his years. Claire, the quintessential middle child, is mellow and easy-going, though the mom jokingly told The Huffington Post that she is showing signs of early teenage years. Lola, the youngest, loves to be the center of attention and is even at times "a little diva," Hartley said.
And even though it can be difficult living with microcephaly, the mom told HuffPost that she loves their life regardless.
"This has been my life for 14 years, I wouldn’t have chosen it, but I love it," Hartley said. "We can either continue to devalue that, or we can look at the gift that we’re getting from these children."
Hartley had a typical pregnancy and delivery with son Cal, but when she gave birth to Claire two and a half years later, she remarked that she'd forgotten "how tiny their little heads are," the mom told HuffPost.
Shortly after that observation her doctor grew concerned.
"At that moment it sent some red flags for everyone in the delivery room," Hartley said.
Hartley's sonogram at 19 weeks pregnant with Claire had been perfectly normal. But after a series of tests, Claire was officially diagnosed with microcephaly at three-and-a-half months old. Hartley and her husband underwent a number of genetic tests, but doctors were unable to determine the cause for Claire's diagnosis.
"They never found a gene responsible for our girls' conditions," Hartley told HuffPost. "They still believe it’s genetic, but no one can find the specific genes that are responsible."
Hartley and Scott were "terrified" to get pregnant again and waited four years before trying. But considering doctors couldn't find a gene from either parent that might explain Claire's diagnosis, the parents thought there would be a good chance their third child would not have microcephaly.
"We didn’t go into it blindly," Hartley said."Claire was at a good point in her life, a lot more independent. I finally felt that I could handle it no matter what happened. We both thought there was a really good chance that nothing would happen. But we just knew no matter what happened we were going to be given the perfect child for our family."
Hartley had multiple sonograms throughout her third pregnancy to monitor signs of microcephaly. Her sonogram at 26 weeks revealed that Lola's head measurements were five weeks behind what they should've been, and she was therefore diagnosed with microcephaly in utero.
After living under a "cloud of gloom" for the first year after Claire's diagnosis, Hartley told HuffPost that her family has adjusted to the changes followed by both of the girls' diagnoses and that today life doesn't feel so hard for them -- despite the challenges.
Claire and Lola don't speak actual words, Hartley told HuffPost, but they communicate by making sounds and gestures. They both have been diagnosed with dwarfism and have cerebral palsy, seizures and reflux.
And while there are definite struggles and adjustments in their lives, the mom worries that recent mainstream conversation surrounding the Zika virus is damaging to the families that are affected by microcephaly.
Hartley spoke about her family's journey in her personal blog, The Hartley Hooligans:
I hope that maybe, in some small way, my testimony can help new mothers whose babies were diagnosed with microcephaly to feel less alone and 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."
Hartley told HuffPost that she is concerned that society is quickly selling the babies with microcephaly "short" on their capabilities; the condition's symptoms vary widely from child to child and range from mild to severe. (Though it's worth noting that the cases associated with Zika virus are largely severe, according to a recent Reuters report.)
In her own experience, a Chicago doctor once told the mom that Claire would likely not live past the age of 1. Hartley has sent that doctor a letter every year, for the past 14 years of Claire's life.
"I just want him to know that it would’ve really meant a lot to me if he'd have given me hope," she told HuffPost.
As for friends, strangers and anyone who has observed her family, Hartley wants them to know that she is really proud of her children and there is no need for pity.
"The pity sucks," Hartley told HuffPost. "The pity for me is the worst thing ever. From the beginning we started getting pity for Claire. I felt pity even from my friends ... but, we're proud of them," she continued, "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."
And as for what the mom of three would like to hear, she said this, "The best thing anyone can ever say is that 'you have a beautiful family,' or 'you're doing a great job.'"
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