“God knows she needed this big Portuguese hair,” Denise Rast says, reaching out to touch the dark, wavy locks of her 9-year-old daughter, Alexa.
The thick tresses cover some “gnarly” scars – the result of major surgery at 9 months old – that zigzag the little girl’s scalp, the Modesto mom says. “Not that she cares. She’s never been embarrassed – she’s the first one to talk about it.”
“It” is craniosynostosis, a condition that occurs in one in 2,000 births. And though the ordeal baby Alexa and her family went through is distant in life’s rearview mirror, craniofacial disorder awareness remains a passion for the Rasts. They continue to open eyes, and wallets, through a mostly annual benefit for the Children’s Craniofacial Association that’s coming up next month.
Alexa was diagnosed at a month old, after her mother’s repeated insistence to doctors that her mildly misshapen head was not simply from passing through the birth canal and would correct itself.
We’ve experienced it, so the children and the parents that have kids that haven’t really experienced it, we get to talk to them and help them through it.
Alexa Rast, on going to the Children’s Craniofacial Association’s retreats and educational symposiums
“It was noticeable to me because I stare at her every day, “ Rast told The Bee in a 2008 interview. “It wasn’t a huge deformity.”
A doctor at Valley Oak Pediatric Associates agreed with Rast that there was something wrong, and referred her and her husband, Michael, to a neurologist. That led to a neurosurgeon and an eight-hour surgery. The operation involved removing a great deal of the baby’s skull and “puzzle-piecing it back together,” including rebuilding an eye socket, Denise Rast says.
Without that operation, the parents were told, the pressure on Alexa’s eye could have led to visual problems, even blindness. If the skull deformity had not been corrected, the resulting pressure on the brain could have meant severe headaches and developmental delays.
Before the pediatrician’s referral, no tests were done on Alexa, her mom says. “It’s a matter of, as a parent knowing something is wrong, get a second opinion, get a third opinion, make sure there are tests done,” she says. “It took an X-ray, that was it, one simple X-ray. Who knows where we would have been if she did not get that pressure released off her brain and her eye?”
Today, Rast says, the family counts its blessings. Alexa’s only condition tied directly to the craniosynostosis is mild hearing loss on the right side because there’s a bend in her ear canal. She wears no hearing aid for it. Alexa was diagnosed with epilepsy but it’s never been determined if that’s a result of either the craniosynostosis or the corrective surgery, her mother says. But she’s rarely had seizures – it’s been about a year and a half since the last – and takes no medication for it.
Because of the difficulty getting Alexa’s craniosynostosis diagnosed, Rast says she immediately felt drawn to help spread awareness, and when she Googled the condition, she learned about the Children’s Craniofacial Association, or CCA. The group’s national spokeswoman is Cher, who starred with young Eric Stoltz in the 1985 movie “Mask,” which put craniofacial conditions in the spotlight.
It’s scary when your child is born not looking so different that it’s obvious there’s something wrong. For us, it was so mild but could have done so much damage to her if it wasn’t fixed, that it’s almost scarier.
Denise Rast, on the importance of persisting when doctors don’t see something you do as a parent
The Dallas-based nonprofit hosts an annual retreat and educational symposium – in a different state each year – for craniofacial children and their families. In late June, the Rasts will travel to Reston, Va., to attend for the fourth time.
Each year, the family – which includes Alexa’s 12-year-old sister, Hadley – gets some curious looks at first that seem to ask, “Who’s the craniofacial kid here?” “People look at her they don’t even know,” Denise Rast says.
But Alexa relates to and bonded with what her mom calls their “cranio family.”
“It means a lot to me because when you go there, nobody gets made fun of and everybody knows that they’re different, and when they go there, everybody’s friends, nobody makes fun of the other people and nobody laughs at the other people,” Alexa says. “It’s just really cool to be able to go there and not be made fun of.”
It’s an important time for craniofacial kids and their families, most of which have much more to deal with on a daily basis because the conditions aren’t as mild as Alexa’s, Denise Rast says. And with many facing ongoing medical bills, they can’t afford to travel to the retreats.
So Alexa is among the cranio kids who raises her hand at camp each year to offer to fundraise, her mom says. The Rasts set a goal of raising $5,000 each year, and have donated well over $20,000 to CCA, she says. Every $1,000 is a scholarship for a family to attend a retreat.
Denise Rast says she treasures the experiences she’s had, the relationships she’s made, through CCA. “As a human, you know life isn’t promised to you,” she says, “but when your actually are literally faced with losing a child, your whole outlook on life becomes different. ...
“When you get to sit face to face with another parent who has had to hand their child over to a surgeon, not knowing if you’re going to see them again, that’s a connection on a totally different level.”
Deke Farrow: 209-578-2327
Alexa’s Craniofacial Awareness Charity Dinner & Dance
When: July 22, doors open at 5:30 p.m.
Where: The Seasons Event Center, 945 McHenry Ave., Modesto
What: Event includes dinner, dancing to music from a DJ, a silent auction and raffles. $50 buffet, $30 children (chicken strips and fries).