Georgia mom of baby with microcephaly shares her story

ATLANTA - Until recently, most of us had never heard of microcephaly.  Then Zika virus exploded onto the international scene.

Almost overnight in Brazil, babies were being born with abnormally small heads, some with brain damage.  Researchers believe the mosquito-borne virus might be to blame for a huge jump in babies born with microcephaly.

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Emma Kitchens’ case is not tied to Zika virus outbreak.   Her parents, Tyler and Mollie Kitchens, shared her story, hoping to teach people more about microcephaly.  Emma has a very mild form of the condition.  If you didn’t know she had microcephaly, you might not even notice it.

But the condition is not the problem, Emma’s mother says.  It’s what can come with it.

Everything about Emma Kitchens is tiny, except her personality.

"Life with her is an adventure, every day,”  her mom Mollie Kitchens says.

At 1, the East Atlanta toddler is her parents’ everything.

"We're just glad she picked us to take her on this journey with her,” her mom says.

And it's been quite a trip.   About halfway through Mollie's pregnancy, an ultrasound revealed Emma's head was smaller-than-expected.

"And they said, 'It could be a lot of things, it could be nothing, but her body is proportionate to her head, so no worries,” says her mom.

Mollie had more ultrasounds to track Emma's head growth,  which was a few weeks behind where it should be.  They call this condition microcephaly.

"Microcephaly is not, for me, it was never a 'Oh, my gosh, all of these things are going to happen,” says Mollie. “It means ‘small head.’ And it does, it, 100%, just means ‘This child has a small head."

Born at 5 pounds, 12 ounces, everything about Emma was tiny.  The Kitchens were told that because Emma's brain was a little slower in growing, she might have some developmental delays.

"I think at that moment, we were both like, ‘this is going to be a special kid,” says Mollie. “She's going to be a little different.  And we are totally 100% grateful for that."

The real challenge they didn't expect.  At about 3 months, Emma had a seizure, and then another, landing them in Children's Healthcare of Atlanta's emergency department.

"I was pretty worried at the time,” remember Emma’s father, Tyler.  “Because your head is spinning on what the possibilities could be."

The seizures stopped for several months, then returned last fall with a vengeance.  There were more tests and more hospitalizations.  Emma was diagnosed with epilepsy, a seizure disorder.

"Tyler and I are constantly on-edge,” says Mollie.  “Wondering when the next seizure is going to happen? Because, even at this point, when we've seen hundreds of them, you never get used to it, ever."

Emma's seizures are tied to her sleep.  So, the Kitchens moved her bassinet into their bedroom, so they can watch over her when she sleeps.

"We haven't gotten a good night's sleep in a long time,” says Tyler.

"Watching your baby have a seizure is just one of the most gut-wrenching, helpless feelings anyone can ever have,” says Mollie. “Because there is absolutely nothing you can do."

So, Mollie and Tyler Kitchens are focusing on what they can do.  Loving Emma.  Working with her.  Making sure she gets regular checkups and therapy for her developmental delays.    

 "Emma is going and growing at her own pace, which by ‘normal’ baby standards is a little behind,” says Tyler. “But she's still growing and she's still making progress, which to me is everything."

The Kitchens don't know how the seizures will affect Emma long-term.  But, they’re seeing signs of hope.  She connects with them.  She looks them right in the eye.  She smiles a lot.

"Every day she's doing something that shows us, 'Mom and Dad, I'm just on my own time. I'm on Emma time. I'll get there.  It's just going to take me a while,’" says Mollie.

Mollie says if she could tell pregnant women anything, she would encourage them not to Google things like Zika virus.

There’s too much frightening stuff out there, she says.  Instead, Kitchens says, rely on your medical provider and trusted medical websites, like www.cdc.gov.  

She says they’re grateful to their team at Children’s Healthcare of Atlanta for guiding them through Emma’s uncertain journey.