Get to Know Baleigh
“I want what every parent wants for their child. I want her to have a sense of self-worth. I want her to achieve as much independence as she can, and I want her to be an asset to her community. Most important, I want her to be happy. - April Walker, Baleigh's mom
You see it in the set of her jaw, in the intensity of her gaze, and in the way she doggedly strives to keep pace with her classmates on the playground at Siskin Children’s Institute. Baleigh Walker displays an inner strength surprising in one so young. At age four, this little girl has stared death in the face and sent it packing.
“Baleigh was in the hospital basically the entire first year of her life, says her mom April.While ultrasounds during pregnancy revealed that Baleigh was small, the prenatal tests did not show any major developmental problems.
“As soon as she arrived, though, we knew, says April. “She was born blue, and when she was a few days old, we found out she had a heart defect. It would be almost a year later before we found out she also has a chromosomal disorder.
Baleigh’s first year was filled with countless doctor visits, especially to her cardiologist. “She had a Blalock-Taussig, or BT, shunt put in first as a temporary fix, says April. “Then she had a double outlet right ventricle operation. Next was athoracic duct repair to try to stop the fluid that was leaking into her body.
The way April reels off medical jargon, you would expect to see her in a white lab coat wearing astethoscope. “People tell me I sound like a doctor, she chuckles. “I research everything. I just think it’s important to know what you’re dealing with so that when I meet with Baleigh’s doctors, I have the knowledge I need to be prepared.
Each surgery took its toll on Baleigh, and eventually a feeding tube became necessary. “Therefor a while Baleigh would go into cardiac arrest every two weeks like clockwork. She just never could seem to recover from the surgeries, says April. “The doctors didn’t really know what else to do for her. It began to feel like they were just doing stuff to her rather than for her.
Baleigh went home the day before her first birthday, and her chances for recovery were slim. In fact, she had hospice care for a year after she went home. She was on 17 different medications then. Today, she’s not on any. Turns out, what this little girl needed most in order to make progress was time at home with her family, time to wrestle and roughhouse with her brother, time to drag all the pots and pans out of the kitchen cabinets and bang on them. Quite simply, Baleigh needed time to be a kid.
While Baleigh’s inner strength is a hallmark of her personality, these days her cognitive andphysical strengths also are shining through. That’s where Siskin Children’s Institute has been able to help.
“It’s been sowonderful to turn our attention from constant acute medical care and focus instead on Baleigh’s development, says April.
Since Baleigh enrolled at the Institute in November 2010, she’s had many developmental successes from learning basic toileting to improving in her social interaction with peers. Last spring, Baleigh joined her classmates in leading the Pledge of Allegiance at the Institute’s annual StyleWorks fundraiser. Her dad, who serves on active duty in the U.S. military and who has completed two tours in Iraq, is proud of his little girl’s patriotic participation.
Perhaps most notable—and transformative—has been Baleigh’s improved mobility. When she arrived at the Institute, Baleigh was dependent completely on others. First,Institute teachers and therapists helped her learn to pull up and stand.April continued helping Baleigh develop those skills at home each evening.The result: This spring, Baleigh graduated to using a walker for mobility,and now there is no stopping her.
April smiles with pride when she mentions the new found independence Baleigh is experiencing as she cruises down the Institute hallways alongside her classmates. Baleigh’s new mantra is: “Get out of my way, because I’m coming through!
Baleigh will spend the 2011-12 school year at the Institute preparing for next year’s enrollment in Kindergarten. When asked what she wants for Baleigh’s future, April chokes back emotion. “I want what every parent wants for their child. I want her to have a sense of self-worth. I want her to achieve as much independence as she can, and I want her to be an asset to her community. Most important, I want her to be happy.
Her teachers,therapists and friends at Siskin Children’s Institute want that for Baleigh,too, and will work hard to help her achieve it.