From the first day of her life two-and-a-half years ago, Emma Redfearn has faced adversity.
Emma was born with hydrocephalus, a medical condition in which cerebrospinal fluid accumulates in the ventricles, or cavities, of the brain. This causes a buildup of intracranial pressure which can result in enlargement of the head, convulsions, tunnel vision, and mental disability.
Treatment involves the placement of a ventricular shunt into the cerebral ventricles to drain the excess fluid. Born at 10-pounds, five-ounces and 22-inches long, doctors performed a V-P shunt surgery a day-and-a–half later, which drained one-and-a-half pounds of fluid.
Since then, Emma and her mother Megan have worked tirelessly with a multitude of doctors and therapists to assist her development. She receives occupational, physical, speech and vision therapy.
The challenges are many, from developing gross-motor skills vital for crawling and walking, to improving trunk and head control. There’s training to help Emma make cognitive choices and improve her sight association. Speech therapy focuses on her articulation and learning how to move her mouth to form and say letters.
Yet, with a positive attitude, countless hours of hard work and perseverance, Emma can now say her ABCs, spell her name and count to 10.
“It’s not about how soon or what age she reaches milestones, it’s letting her achieve them at her own pace,” Megan said. “When she reaches them, I’m just as happy and thrilled as she is.”
When Emma was one-year old, Megan started a blog titled Emma Lee & Me as a way to track her daughter’s accomplishments and share Emma’s progress with family and friends.
As time progressed, people encouraged Megan to make the blog more public. A private person by nature, Megan was wary of opening up their struggle to the outside world, but reassurance came from the very person she’s devoted her life to caring for.
“I thought, if my daughter can get up and smile and sing, maybe I should have that same kind of strength,” Megan said.
Readers immediately reacted to their story and the achievements documented on the blog, which fostered inspiration and pride in how far Emma has progressed.
The blog also led to other people talking to Megan, who investigated the Hydrocephalus Association website and contacted them to inquire if there was a support group located in the DFW area.
One didn’t exist and the association suggested that Megan, a resident of Flower Mound, start one. She organized the Dallas Hydrocephalus Support group in April and almost immediately experienced an outpouring of communication from people living just minutes away to those in neighboring states.
“I was shocked to find I’m not alone … there are many people with kids– and adults themselves– dealing with hydrocephalus,” Megan said. “It’s nice to relate with them, compare ideas and see what kinds of therapies have worked.”
As a single mother who works full-time and is extremely proactive with her daughter’s therapy, Megan admits it’s a lot to handle. She credits Emma with keeping her spirits up.
“Emma is always happy and positive, she doesn’t cry a lot, and she has so much strength and works so hard,” Megan said. “I’m constantly inspired by her.”
September is Hydrocephalus Awareness month. For more information about hydrocephalus, visit www.hydroassoc.org or contact firstname.lastname@example.org.
To see Megan and Emma’s blog, visit Emmalee-and-me.blogspot.com.