Elena Wiens is a chatty two-year-old with a perpetual smile. She can get lost in an imaginary world of tea parties and talking elephants as much as any kid her age.
But there’s one thing she loves to pretend most.
“What’s Elena?” mom Kayla asks.
“A ballerina!” the tot replies.
To demonstrate, she balances herself at the edge of a low table and extends her left leg back in wobbly arabesque form, as a proud Kayla beams.
It’s a signifiant accomplishment for the tyke, who doesn’t yet walk. Kayla credits support from the Fraser Valley Child Development Centre (FVCDC) – this year marking its 30th anniversary – with helping Elena to become more mobile than she otherwise might be.
Elena was born with spina bifida, a congenital disorder that involves the incomplete development of the spinal cord or its coverings. The condition usually results in some form of paralysis, the severity of which varies from child to child.
Kayla and husband Tim were not aware of Elena’s condition until the delivery room, when she was born with a toonie-sized hole through which her spinal cord was protruding from her lower back.
The newborn, the couple’s first child, was transferred to B.C. Children’s Hospital, where she had surgery to close up the opening when she was just 12 hours old.
The news left Kayla and Tim reeling. They had never heard of spina bifida, and there was a lot of information being presented to them by doctors.
They learned that it is called a “snowflake condition” because no two children exhibit exactly the same symptoms, and there was no way to know what Elena’s future would be.
“There certainly was a grieving process, because you imagine your child playing soccer or being a ballerina,” Kayla said.
Elena’s form of the condition affected her bladder control, and she required a catheter to be inserted every four hours for her first month of life. This “trained” the bladder to release itself.
At three months of age, she wore full leg casts, to help keep her limbs in a stretched position.
But despite these early impacts, Kayla said it took some time for her to be able to adapt to Elena’s diagnosis.
“I wasn’t able to read anything about spina bifida until she was about nine months old. I couldn’t be overwhelmed. I had to first learn to be a mom, and then I had to learn to be a nurse,” Kayla said.
She said she was grateful to have the FVCDC there from the start. Infant development consultant Stacey Barfoot first met the family when Elena was four weeks old, and a physiotherapist began coming into the home soon after.
Over time, occupational and physiotherapy helped Elena with the development of gross motor skills such as rolling over, sitting, crawling and standing. She began crawling about four months ago, and can now pull herself to a standing position.
Kayla, who is seven months’ pregnant with the couple’s second child, is certain that her daughter won’t stop there.
“It’s day by day, month by month, but she’s so incredible at pushing herself. I have no doubt she will walk, even if it’s with crutches.”
FVCDC staff also offer information and loans of adaptive equipment that helps Elena get around. For example, she currently uses a “caster cart,” a special low-to-the-ground wheelchair, but she will soon progress to a more traditional version.
She also wears special shoes and “boots” which stabilize her legs, otherwise her limbs would be in a permanent squat position. FVCDC staff assist with the fitting of this specialized equipment and ensure that it best suits Elena’s and her parents’ needs. Nothing is done without the family leading the way, Barfoot said.
“We’re here to build their confidence and work with their strengths,” she said.
Kayla said this involvement has been instrumental in Elena’s development.
“Without this kind of support, our family wouldn’t be as strong. Elena wouldn’t be as strong, and she would not have progressed nearly as much,” she said.
As Elena performs another arabesque, Kayla no longer grieves that her daughter cannot be a ballerina.
Thirty years celebrated
The Upper Fraser Valley Neurological Society was founded in October 1982 to bring services for children with special needs to the Upper Fraser Vallley.
By the year 2000, more than 45 Fraser Valley Child Development Centre staff were serving more than 1,000 children and their families from locations in Abbotsford, Mission and Chilliwack. Today, that expertise reaches children with developmental delays and their families in homes, daycares, preschools, schools and other settings in those three communities, as well as Agassiz, Hope and the Fraser Canyon. For more information, visit fvcdc.org.