In her first few weeks of life, Alianna Cervantes struggled to eat and breathe. When her parents tried to coax her to drink from a bottle, she would wheeze and tire after just a few minutes.
She was born in July 2020 with a cleft palate and an unusually small jaw, a condition known as Pierre Robin sequence. Her tongue was crowded into a cumbersome position that made it hard for her to swallow and often impaired her breathing. Karina Medina Moya and Jonathan Cervantes, Alianna’s parents, wondered if their firstborn would need jaw surgery.
Experts at Stanford Medicine Children’s Health offered something better: Alianna received an orthodontic device that immediately repositioned her tongue and gradually stimulated her jaw to grow to a healthy size without surgery. The Stanford Medicine Children’s Cleft and Craniofacial Center is the only team in North America to use this approach, which they have offered since 2020.
“The most important thing about this treatment is that babies are able to breathe comfortably right away without surgery,” said HyeRan Choo, DDS, DMD, MS, director of craniofacial and airway orthodontics at Stanford Medicine Children’s Health. The retainer-like device used in the treatment is custom-made for each patient, said Dr. Choo, who began caring for Alianna when she was a few weeks old. “It immediately opens the airway and keeps the baby’s tongue out of the way.”
A rare diagnosis
When Alianna was 2 days old, a nurse at the hospital where she was born realized that she had a cleft palate, a gap in the roof of her mouth. Cleft palate, which affects about 1 in every 1,700 U.S. births, makes it difficult for infants to generate enough suction to nurse or drink from a standard baby bottle. Some affected babies can use a special bottle that allows the caregiver to control the flow of milk.
But it didn’t help Alianna—she required a feeding tube that ran from her nose into her stomach. Her parents were told that she could leave the hospital once she learned to eat by mouth. Because she continued to have problems, she was transferred to the Neonatal Intensive Care Unit at Lucile Packard Children’s Hospital Stanford, where caregivers noted her small jaw and diagnosed her with a much rarer condition that sometimes occurs with cleft palate. Called Pierre Robin sequence, it affects 1 in 3,500 to 8,500 births.
In Pierre Robin sequence, because the baby’s mouth is so small, it’s common for the tongue to fall backward toward the throat, blocking the airway. In other cases, including Alianna’s, babies hold their tongue inside the cleft on the roof of the mouth. Although this helped Alianna breathe, it got in the way of feeding.
“Many babies with this condition have feeding difficulties,” said Dr. Choo. “Breathing and swallowing are always paired in the suck-swallow-breathe mechanism, and when the airway is disturbed, this three-step mechanism is also disturbed.”
Alianna’s parents had read online about jaw distraction surgery for infants with Pierre Robin sequence. In the surgery, the baby’s jawbone is cut in two places and braced by separating hardware, with the ends of the bone a few millimeters apart. New bone grows in the gaps, gradually enlarging the jaw.
Dr. Choo encouraged Karina and Jonathan to consider the retainer instead. Developed in Germany, where it has been used for decades, this noninvasive approach avoids the risks of surgery and can be started more quickly. The retainer fits against the roof of the mouth and extends in back to the base of the baby’s tongue. It pushes the tongue forward and downward, keeping the air passage from the nose to the back of the throat clear so that the baby can breathe consistently. This allows the baby to learn to eat by mouth.
“When you push the tongue—which is a huge muscle—forward and downward, bone remodeling in the temporomandibular joint area is very activated,” said Dr. Choo, referring to the joint where the jaw joins the skull. Wearing a retainer during the first three to six months of life, when growth rates peak, stimulates jaw enlargement. This makes room in the mouth for the baby’s tongue and can potentially stabilize the new jaw position permanently.
Help to breathe, eat, and grow
When Dr. Choo suggested the retainer, Jonathan was enthusiastic about the noninvasive treatment, but Karina felt nervous. Dr. Choo arranged for her to speak with another mother whose child had received a retainer, helping her feel reassured about what to expect for Alianna. Dr. Choo also explained that if Alianna’s jaw needed more expansion after using the retainer, surgery would still be an option later.
A retainer was custom-made for Alianna using a dental impression of her mouth. Soon after the device was fitted, her parents noticed a difference in her oral feeding sessions.
“With the retainer, she drank a lot more comfortably,” Karina said, adding that after a few weeks, Alianna was consistently able to coordinate sucking, swallowing, and breathing. “It was amazing. That’s when I began to trust the process and knew it was going to be worth it.”
Alianna stayed in the hospital for about three weeks after receiving the retainer, until she was breathing easily and steadily gaining weight, and her parents were comfortable removing the device for daily cleanings.
“Dr. Choo was there for my husband and me during every cleaning and every time the retainer was taken in and out,” said Karina. “She was very supportive. To me, that meant a lot.”
Close collaboration between ear, nose, and throat specialists; neonatologists; and craniofacial orthodontists is required for the orthodontic airway plate treatment to be offered, Dr. Choo noted. She recently published a scientific journal article about her results to encourage other experts in North America to consider the treatment, which currently is mostly used in Europe.
“Many hospitals don’t have a craniofacial orthodontist at all,” she said. “We’re fortunate to be able to offer this option at Stanford Medicine Children’s Health.”
Alianna wore the retainer until she outgrew it, which took about four months. Her jaw growth caught up to the rest of her face and is expected to continue on a normal trajectory, so she won’t need jaw surgery. She will receive surgical repair of her cleft palate after she turns 1 year old.
Best of all, according to Karina and Jonathan, 10-month-old Alianna is now crawling, trying to stand up, and meeting all her other developmental milestones. She loves when her parents sing her favorite songs, the ABCs and “Twinkle, Twinkle, Little Star.”
“This treatment made a huge change in my daughter’s life,” said Jonathan.
“She’s a very happy baby, very energetic,” Karina added. “We’re very happy we took this route. It’s amazing seeing her grow.”
Peter Lorenz, MD, recently did the cleft palate repair on Alianna, and she healed quite well with no complications and no breathing issues.
Article published in Neonatal Intensive Care Summer 2021 issue.
