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 received widespread attention due to its suspected link to the Zika virus.
Hartley and her husband, Scott, have three children: Cal,17, Claire,14, and Lola, 9. Hartley describes Cal as an awesome teenager big brother. Claire, the middle child, is mellow and easy-going. Lola, the youngest, loves to be the center of attention and is even “a little diva,” sometimes.
Even if it can be difficult living with microcephaly, the mom told that she loves their life regardless. 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”. Shortly after that observation her doctor grew concerned.
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 had a number of genetic tests, but doctors were unable to determine the cause for Claire’s diagnosis.
Hartley was scared to get pregnant again and waited four years before trying again. 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. 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.
Claire and Lola don’t speak actual words. They communicate by making sounds and gestures. Both being diagnosed with dwarfism and have cerebral palsy, seizures and gastric reflux.
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. “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.”
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.'”