Against all odds: Growing up with microcephaly

Against all odds: Growing up with microcephaly

February 11
00:24 2016

Emily Miller | Staff Writer

@emily12miller

“There’s something wrong with your daughter.”

The news came 30 minutes after Ashley Sanders had delivered a baby girl, Audrey, inside a small hospital in Austin, Texas in 2011. A terrifying sentence for a parent to hear at any time—let alone right after giving birth.

“Before then, the whole pregnancy was completely uneventful,” Sanders said. “They had no idea, we had no idea … nobody knew anything.”

Audrey was born with microcephaly, a neurological condition that causes the head and brain to develop incompletely and measure abnormally small. This results in developmental challenges, including difficulty or inability walking and talking, seizures, inability to eat and, on rare occasions, it can be fatal.

In 2012, little to no information was available on microcephaly. Only recently has information come to light because of the mosquito-borne Zika virus, capable of inducing a slew of birth defects, including microcephaly.

“I had doctors telling me everything. We had the tests run and they said she would never walk, she would never talk [and] she was going to have seizures. One even told me she’d die at six months,” Sanders said. “And so we kind of just kept checking things off the list, like, ‘OK, well she’s not doing that, she’s not doing that.’ We kept on progressing.”

There’s a broad spectrum of how microcephaly can affect an individual. For Audrey, that list was unknown. She was a “unique case,” according to her doctors. The only thing Sanders and her husband could do was wait and hope.

“They sort of lump everything in there and say, ‘Cross your fingers. Wait and see,’ and it really is a wait and see kind of thing,” Sanders said. “We took it day by day.”

Playing with chance

Microcephaly can be detected via ultrasound measurements during the later to third trimester of pregnancy to determine a child’s proportions. Several tests can be administered to gauge the child’s health, but most tests for microcephaly center on measurements of the skull.

Sanders’ case was different.

Audrey Sanders points out fruit she knows about the chalkboard at Keystone Pediatric Therapy. Hannah Ridings | Senior Staff Photographer

Audrey Sanders points out fruit she knows about the chalkboard at Keystone Pediatric Therapy. Hannah Ridings | Senior Staff Photographer

“I’m five feet tall, so she was measuring small,” Sanders said. “So they just assumed, ‘Oh she’s just a petite girl.’”

Unlike how the Zika virus can travel via mosquitoes, the Sanders carried a recessive gene that caused Audrey’s condition, among other developmental setbacks.

Audrey’s attention span, fine motor skills and ability to handle a new or over-stimulating environment are some of the few areas riddled with obstacles.

“My mother took me aside one day and told me I was an awful parent for how Audrey acted, how she moves around so much and struggles in busy places,” Sanders said. “I was so upset, I came to her speech therapy that day in tears. I felt like I was doing something wrong, but this is the only parenting I know.”

Audrey’s current primary form of speech is American Sign Language and, at 4 years old, she already has an immense vocabulary. The language uses facial expressions, movement and hand signs to communicate.

“She’s trying so hard,” said Kathleen Miller, a speech therapist who sees Audrey at Keystone Pediatric Therapy. “It’s frustrating for her to know and understand but be unable to express. When she makes those sounds, that’s her trying to get her words out.”

Miller has been seeing Audrey since she was 11 months old and said the little girl has come a long way since they met.

“I’ve seen her go from not understanding or being able to make a sound to saying full words with consonants – which is so hard for kids like her,” Miller said. “Every day she’s doing something new.”

Audrey has surprised even her parents with her dedication and passion to learning.

“The other day she kept signing this one sign Mark and I didn’t know,” Sanders said. “We kept thinking, ‘How does she know that?’ and we looked it up, and apparently she learned ‘basketball’ all on her own. She’s teaching us at this point.”

Making progress

When offered M&M’s during therapy, Audrey happily turned to her mother to sign each color of the candy before eating it. Eager and undeterred even as her small fingers struggled to create the ‘G’ figure for ‘green,’ Audrey kept trying.

Audrey Sanders holds onto therapist Kathleen Miller’s hand during the more difficult part of her speech therapy. Hannah Ridings | Senior Staff Photographer

Audrey Sanders holds onto therapist Kathleen Miller’s hand during the more difficult part of her speech therapy. Hannah Ridings | Senior Staff Photographer

“She’s been learning so quickly. She’s at 5-year-old’s level receptively,” Miller said. “She was talking up a storm when Ashley [her mother] left the room. It’s like she waits for the chance to show off.”

Audrey’s eagerness and progress are unmistakable. When prompted to hiss like a cat for speech practice, she lights up, rushing from her seat to point to the picture of a cat placed on one of the doors throughout the pediatric clinic.

“It’s like she’s going, ‘No, silly, that’s a cat, see?’” Sanders laughed. “She’s always so sassy, too, and she’s sneaky. She’ll hug you to try and make you stop getting her to do something, or to grab at something when you’re not looking.”

When searching images on Google or listening to the recent evening news about more outbreaks of the Zika virus, microcephaly has been either downgraded to “an abnormally small head” or “a horrific disease,” Sanders said.

“A piece of me is encouraged that it’s getting coverage now, so people can get more educated, but another part of me is upset because it’s getting treated like an epidemic,” Sanders said. “There’s so much negative association with it that it’s frustrating for me because here we are. Our child already has so many challenges that she has to face; I don’t want that stigma too.”

Audrey is no horrific case. With high pigtails and plenty of smiles, even with the frustrations of learning, her progress is not an isolated incident.

The condition is lifelong—there’s no cure—but her parents said there is no denying that progress is progress. Audrey “burst right into the therapy room” for her session, despite doctors saying she would never walk, Sanders said. She will start kindergarten in the fall.

“It’s been rewarding,” Sanders said. “It’s challenging, but it’s been rewarding to see how much she is learning and developing and growing. She has a long way to go, but she’s going.”

Featured Image: Audrey Sanders celebrates a correct answer during her language and speech therapy with Kathleen Miller at Keystone Pediatric Therapy. Hannah Ridings | Senior Staff Photographer

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