Newborn avoids jaw surgery with a retainer fitted at Stanford Medicine
Stanford Children’s Health is the only place in North America to offer a noninvasive, orthodontic approach to Pierre Robin sequence.
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 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 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, director of craniofacial and airway orthodontics at Stanford Children’s Health. The retainer-like device used in the treatment is custom-made for each patient, said 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,” Choo said. “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.
Choo encouraged Moya and Cervantes 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 the baby can breathe consistently. This allows the baby to learn to eat by mouth.
Jaw surgery can’t be performed until a baby is a few months old, whereas a retainer can be fitted for a newborn. The retainer also takes advantage of babies’ enormous natural capacity for growth.
“When you push the tongue — which is a huge muscle — forward and downward, bone remodeling in the temporomandibular joint area is very activated,” said 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 permanently stabilizes the new jaw position.
Help to breathe, eat and grow
When Choo suggested the retainer, Cervantes was enthusiastic about the noninvasive treatment, but Moya felt nervous. Choo arranged for her to speak with another mother whose child had received a retainer, helping her feel reassured. 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,” Moya 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 Moya. “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, Choo noted. She recently published a 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 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 Moya and Cervantes, 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 Cervantes.
“She’s a very happy baby, very energetic,” Moya added. “We’re very happy we took this route. It’s amazing seeing her grow.”
Stanford Medicine integrates research, medical education and health care at its three institutions - Stanford University School of Medicine, Stanford Health Care (formerly Stanford Hospital & Clinics), and Lucile Packard Children's Hospital Stanford. For more information, please visit the Office of Communication & Public Affairs site at http://mednews.stanford.edu.