By Lauren Caruba, San Antonio Express-News, Jan. 3, 2021
Ily Guckian was still in the neonatal intensive care unit when her mother noticed something was amiss.
Born via emergency cesarean section about two months early, Ily spent the first months of her life in late 2019 at Methodist Hospital | Stone Oak. At 4 pounds, 8 ounces, her body was too underdeveloped for her to eat and breathe on her own. She spent the majority of the time in an isolette, an enclosed incubator frequently used to protect and facilitate the growth of premature infants.
As time wore on, her mother, Heather Guckian, realized that the right side of the girl’s forehead was noticeably protruding. A physical therapist at the hospital confirmed her observation.
Ily had developed plagiocephaly, or a skewed head. The condition can happen in babies who are premature or born with stiff neck muscles or who have spent too much time lying in the same position.
While Ily was on her back in the incubator, a portion of the back of her still-pliable skull had flattened, skewing its growth to the right. The problem persisted even after NICU staff rotated her in the isolette. Her ear, forehead, eyebrow and one of her cheeks were affected by the asymmetry.
Such conditions are not uncommon, and they’re happening with greater frequency, said Darren Poidevin, a licensed orthotic and prosthetic practitioner at UT Health San Antonio’s Cranial Remolding Program.
In recent decades, as public health campaigns have sought to reduce rates of sudden infant death syndrome, parents have increasingly placed their babies on their backs, in bouncers and in carriers. That position is safer for the baby, but it increases the risk of head deformity, which occurs in about 1 in 200 infants, Poidevin said.
“I’d rather have a flat head than the alternative,” he said.
Plagiocephaly and brachycephaly — a flattening of the back of the head — tend to develop more easily in premature babies, whose skulls are even more malleable than a full-term infant.
The UT Health San Antonio clinic, which sees about 1,000 patients each year, also treats a smaller number of babies with craniosynostosis, a more serious birth defect where an infant’s skull fuses too early, before the brain has fully developed, leading to intracranial pressure, irregular brain development and a misshapen head.
While research is not as definitive about the medical concerns associated with a flattened or asymmetric head such as Ily’s, Poidevin said there are concerns about chronic ear infections, jaw pain and developmental delays. The long-term effects of plagiocephaly and brachycephaly are hard to study, he said, because they are so easily corrected through several months of wearing of an orthotic helmet.
Ily’s parents, Heather and Jason, were referred to the cranial remolding clinic at UT Health San Antonio when she was about 3 months old. It’s usually better for Poidevin to see babies as early as possible, but Ily was still so small that she had trouble holding up her head.
During his evaluations for helmet therapy, Poidevin encourages parents to take steps to mitigate the problem, including repositioning infants more frequently, prioritizing time on their stomachs and encouraging neck movements. He told Ily’s parents to bring her back for further evaluation in six weeks.
When Ily returned, her head was still skewed. A range of up to 6 millimeters of head skewing is normal, but laser scans showed that Ily was about 14 millimeters — moderate to severe asymmetry.
She qualified for a helmet, which she would need to wear 23 hours a day for three to five months to correct her skull shape. During that time, the compressible foam-lined helmet would provide resistance to bulging areas of the skull and direct her head to grow in directions where there was a void.
While ordering Ily’s helmet from a company that made orthoses, the Guckians discovered that there were all manner of colors and patterns, from solid white to those customized to look like a football helmet. On a whim, Heather chose a leopard print, which she thought was “the cutest thing ever.” She figured they could change the pattern later through a local printing company in San Antonio.
Then the coronavirus pandemic hit. The leopard print stayed.
For three months over the spring and summer, Ily wore the helmet nearly every waking moment. Even as the virus began to spread in San Antonio, her parents took her to regular appointments with Poidevin so that the helmet could be adjusted to accommodate her head growth. Staying home during Texas’ hot summer months was actually easier on Ily, who was prone to overheating from the helmet.
The Guckians’ older daughter had competed in pageants, and their connections to the pageant community had led Ily to be crowned Baby Miss America by Star of America while she was still in the NICU. As the organization’s national pageant approached, the family considered whether it would be safe and worthwhile for Ily to compete.
When someone made an offhand comment assuming that Ily wouldn’t compete in the helmet, it “sealed the deal,” Heather said.
“Yes, we are going to do it, and yes, she is going to wear the helmet, because that is who my kid is,” said Heather, 43, a teacher. “I didn’t feel like her being in a helmet was in any way shameful or made her less of a person.”
In June, the family drove to San Marcos for the pageant, which was replete with coronavirus precautions — face mask requirements, copious hand sanitizer, physical distancing and temperature checks. Ily participated in the playtime and dress competitions, helmet and all.
During the competition and everyday interactions with other families, the Guckians took advantage of their platform, using it as an opportunity to dispel misconceptions about babies who wear helmets. When Heather saw other parents telling their children that her daughter was mentally disabled or hadn’t been loved enough, she took it upon herself to gently educate and correct them.
“There’s so many reasons why babies wear helmets. It doesn’t matter what the reason is,” Heather said. “We just tried really hard to be open to people’s questions.”
Poidevin said he has been impressed by how Ily’s family refused to allow the helmet to define her.
“You see a child with a helmet on and say, ‘Oh, something’s wrong with them,’” Poidevin said. “That acceptance and no limitation, putting her out there, I thought was extra special.”
He also advocates for parents and pediatricians to educate themselves about the benefits of a baby being fit for a helmet earlier in life, about 4 to 6 months, when skull corrections are most easily accomplished.
By the end of her time wearing the helmet, Ily’s head asymmetry had been corrected to within 2 millimeters.
“It’s just amazing, the miracles that happen each and every day,” said her father, Jason. “And Ily is certainly one of them.”
Read the full story at the Express-News