Wednesday, January 10, 2024

Inside the booming business of cutting babies’ tongues

Tess Merrell had breastfed three babies and never expected trouble with her fourth. But after a month of struggling with her newborn, she hired Melanie Henstrom for help.

Ms. Henstrom, a lactation consultant, identified a culprit: The infant’s tongue was tethered to the bottom of her mouth. It was a common problem, she said, and could be fixed with a quick procedure at a dentist’s office

“It was touted as this miracle cure,” said Ms. Merrell, a high school soccer coach in Boise, Idaho.

Ms. Henstrom recommended a dentist, who in December 2017 cut under the baby’s tongue with a laser. Within days, the infant, Eleanor, was refusing to eat and had become dangerously dehydrated, medical records show. She spent her first Christmas on a feeding tube.

For centuries, midwives and doctors have been cutting such “tongue-ties” to ease breastfeeding. But the procedure’s popularity has exploded over the past decade as women face intensifying pressure to nurse.

Lactation consultants and dentists have aggressively promoted the procedures, even for babies with no signs of genuine tongue-ties and despite a slight risk of serious complications, a New York Times investigation found.

A small fraction of babies are born with a bundle of tissue that attaches the tip of their tongue to the bottom of their mouth. In some pronounced cases, doctors snip that tissue. But many tongue-ties are harmless, and the evidence that cutting them improves feeding is scant.

Yet some lactation consultants and dentists pitch laser surgery to anxious and exhausted mothers like Ms. Merrell as a cure-all that will improve breastfeeding and prevent a litany of health problems, including sleep apnea, speech impediments and constipation, according to dozens of parents, dentists, doctors and consultants.

Tongue-tie evangelists recommend lasering not only the tissue under the tongue but also the webbing that connects the lips and cheeks to the gums. Diagnosing and cutting these “oral ties” — often for hundreds of dollars — has become a niche industry.

One well-known dentist in Manhattan takes in millions of dollars a year from his tongue-tie practice. Lactation consultants who refer patients and assist dentists get paid, too. And companies that make lasers are also jumping on the trend.

It is difficult to tally the volume of surgeries, which are often not covered by insurance. But by all accounts the numbers are soaring.

Tongue releases done in hospitals — a small proportion of the total — grew more than 800 percent nationally between 1997 and 2012, to more than 12,000, one study found. Ear, nose and throat specialists in 25 states said they had seen sharp increases in requests for tongue-tie consultations, sometimes overwhelming their schedules. And searches for “tongue tie” on Google reached a record in June, more than doubling over the last five years.

Many families swear by the procedures. But the tongue-tie boom has unnerved pediatricians across the country.

In 2020, a large practice in New Jersey sent an email to families warning that babies were “being clipped, snipped and lasered at an alarming rate.” Last year, an office in Kentucky issued a similar alert, citing babies who refused to eat and were in “severe pain” after laser procedures. Dr. Charles Cavallo told The Times he wrote that alert in response to what he saw as a “money grab” by local dentists and lactation consultants.

Serious complications are rare. But doctors said they had seen the cuts cause such pain that babies refused to eat, becoming dehydrated and malnourished. A few said newly floppy tongues blocked infants’ airways.

Some parents said their guilt from seeing their babies suffer tipped them into depression. Others spent thousands of dollars on chiropractors and speech therapists who claimed their services were necessary for successful recoveries.

Unlike most medical specialties in America, the tongue-tie world operates with little oversight. State dental boards accept complaints from the public, but they rarely suspend dentists’ licenses. And only three states regulate lactation consultants.

Ms. Henstrom, for example, has continued to practice as a lactation consultant in Boise, despite health care workers and clients repeatedly filing complaints about her.

In a brief phone call, Ms. Henstrom said she gave careful attention to each client. “I have literally thousands of people who are thrilled with what I’m doing,” she said. She did not respond to a list of detailed questions.

The idea that tongue-ties can interfere with breastfeeding has been around for centuries. Midwives once used a long, sharp fingernail to rip the tissue beneath a baby’s tongue. In 1601, a royal surgeon cut the tongue-tie of Louis XIII, the future king of France.

But doctors have also long raised alarms about the procedure. “Frequently the parents are deceived, for profit, greed and ignorance,” a German obstetrician wrote in 1791. “This aid is abused, and one unties where nothing is tied.”

With the arrival of mass-produced formula in the 20th century, breastfeeding fell out of favor, and tongue-ties were rarely discussed. That began to change in the 1970s, as breastfeeding made a comeback.

Sucking from a bottle is easy. But to breastfeed, infants must learn to use their tongues to extract milk.

Specialized lactation consultants like Alison Hazelbaker emerged to teach nursing techniques. Some babies she saw in the 1980s had obvious tongue-ties that prevented them from nursing, she said, but pediatricians knew little about the condition. In 1993, she developed an assessment tool for tongue-ties that is still in use.

At the time, pediatricians carried out the releases with scissors, typically on babies with ties under the front of their tongues.

But in 2004, an article in the newsletter of the American Academy of Pediatrics suggested that a wider range of babies might benefit. A pediatric surgeon and a lactation consultant wrote that some patients had subtle tethers at the back of their tongues. Others had tissue tightly connecting their lips to their gums. Any of these ties, the authors warned, could impede breastfeeding.

Despite relying on anecdotes, the article became influential. Ms. Hazelbaker said she watched with alarm as the diagnosis of tied tongues, cheeks and lips accelerated. Before long, Facebook groups about tongue-ties gained thousands of members. “Everything started to go to hell in a handbasket,” she said in an interview with The Times.

In 2020, a panel of 16 leading ear, nose and throat specialists published guidelines warning that tongue-ties were being over-diagnosed and that cheek-tie releases simply “should not be performed.”

With or without surgery, breastfeeding often improves over time, making it hard to sort out cause and effect. Many women credit the procedures for making nursing easier.

Before the release, “I was sob-crying, it was so painful,” said Adrianne Parkey of Little Rock, Ark., whose baby was born this month. After, she said, she felt immediate relief. Some research has shown that the procedure reduces nipple pain.

The procedures appear to be more popular than ever. Even some of their original proponents now worry the releases are performed too often.

“I have huge concerns,” said Catherine Watson Genna, a lactation consultant in New York who co-wrote the 2004 newsletter article. Newer research, she said, has shown that some babies might be mistaken for having tongue-ties when in fact they have other conditions that restrict the tongue. “Everything looks like a nail because everybody’s got a hammer now.”

While lasting problems from oral releases are rare, they can be wrenching for families.

In Montana, a dentist released lip and tongue-ties on Clara Reck’s infant daughter in November 2022. Ms. Reck said her baby lost the ability to suck. Medical records show that she dropped from the 97th to the 15th percentile for weight in three months. Until last month, her daughter was still getting feeding therapy.

In Delaware, Dr. Nicole Aaronson, a pediatric ear, nose and throat surgeon, said that last week, she saw an 11-day-old boy who was hospitalized for weight loss because of tongue damage from a laser procedure. “He will heal and eventually do fine, but my point is that these procedures are not without risk,” she said.

And in Texas, Satina Bolton said she was pitched on “how we’re going to save your breastfeeding journey.” After two tongue-tie procedures, her daughter was hospitalized and needed a feeding tube.

Dr. Scott Siegel of Manhattan has been cutting babies’ tongues for two decades, ever since he took over the practice of one of the authors of the 2004 article.

He said he sees up to 100 patients a week, charging $900 for a five-minute procedure to release oral ties.

In November, Times reporters watched Dr. Siegel perform releases on three babies.

Before each procedure, he met with the parents, listing what he described as tongue-tie symptoms, including spitting up, gas and falling asleep while trying to breastfeed.

One mother came in because of trouble breastfeeding. Another had a fussy baby, and the third was hoping to avoid future health issues. Dr. Siegel told one family that the release could prevent problems like sleep apnea. “We’re looking at being proactive,” he said.

Working with two assistants, he swaddled the babies and covered their eyes with protective glasses. The laser released a plume of white vapor as it cut tissue.

Dr. Siegel acknowledged that few medical studies supported releasing oral ties. But his experience had convinced him that the procedures improved feeding and had other benefits. He has hundreds of five-star reviews online.

Not every family has been satisfied. Lainie Goldwert’s lactation consultant referred her to Dr. Siegel because her newborn was constantly nursing, never seeming satiated. After the tongue release, she said, her daughter’s mouth became weak. Ms. Goldwert had to squeeze her cheeks to help her suck, even when using a bottle.

“We went from a child who was breastfeeding voraciously to one who was not able to breastfeed,” she said. “It felt like, what the hell did I just do to my child?”

Dr. Siegel said he had very low complication rates. As for Ms. Goldwert’s baby, “this is a case that I would most likely treat differently now,” he said, including by warning parents that the recovery process might be long and complicated.

Companies that manufacture the lasers used by Dr. Siegel and other dentists are catering to this new market.

One company, Biolase, sells an $80,000 laser machine. In April, it hosted a conference at a resort in Scottsdale, Ariz., for more than 100 pediatric dentists and their colleagues. It was called “Tequila and Tongue Ties.”

Before rounds of tequila shots and margaritas, attendees were trained on how to perform tongue-tie releases and use social media to build their businesses. Dentists posed for photos with bottles of tequila against a backdrop that read, “Nacho average dental meeting.”

Biolase’s chief executive, John Beaver, said he thought tongue-tie releases were beneficial to patients. He said the company’s financing plan meant dentists needed to perform only three procedures a month to break even and could generate a “huge” return on investment by doing more.

Dr. Soham Roy, chair of the pediatric ear, nose and throat practice at Children’s Hospital Colorado, has operated on babies injured by lasers. “There are some folks out there who either buy or rent these lasers and they use them as cash-making machines,” he said.

Ms. Henstrom, the lactation consultant in Idaho, was converted to the benefits of tongue-tie releases after undergoing the procedure herself in her 40s. She claimed that it improved her scoliosis and that she stopped getting migraines and acid reflux. “I immediately felt a release of tension not just in my mouth, but throughout my entire body,” she wrote on her website.

After arriving in Boise in 2017, Ms. Henstrom got to work establishing her lactation consulting business, Baby Bonds, taking midwives out to lunch and offering free breastfeeding classes. Undiagnosed tongue-ties were always her focus.

“If your baby is super fussy, chances are your babe has a missed tongue tie,” her website states.

While the group that grants credentials for lactation consultants says they should not diagnose tongue-ties if they don’t have medical degrees, Ms. Henstrom often unequivocally tells parents that their infants are tongue-tied, sometimes without examining them in person, according to parents and her social media posts.

“According to pics and video, babe is for sure tied,” Ms. Henstrom wrote in 2020 in response to a parent’s post on a tongue-tie Facebook group.

In 2017, Ms. Merrell, fed up with trying to get Eleanor to nurse comfortably, contacted the local chapter of La Leche League, a well-known organization that promotes breastfeeding. Ms. Henstrom, a volunteer with the group, responded in a Facebook message that Eleanor’s problem was “likely” a tongue-tie.

Ms. Merrell replied that her pediatrician, a physical therapist and a previous lactation consultant had all said that wasn’t the issue.

“Trust me,” Ms. Henstrom said later in the exchange. “I have seen this hundreds of times and a revision always fixes it.”

“I hope so,” Ms. Merrell responded. “It would be nice to have an easy fix.”

After the surgery, Eleanor initially seemed to be improving. But then she stopped eating and became dehydrated. Her pediatrician sent her to the hospital. “We felt really stupid afterward because we paid to hurt our baby,” Ms. Merrell said.

“I feel terrible for what the Merrell family had to endure,” said Dr. Joel Whitt, the dentist who performed the procedure. He said this was the only bad outcome of nearly 800 such surgeries he had performed. He referred The Times to two past clients, who confirmed that their babies had benefited from surgery.

Dr. Whitt said he later dramatically reduced the volume of surgeries he was performing, in part because he worried that the benefits of releasing lip ties were being overstated.

By early 2020, Ms. Henstrom was exclusively referring patients to another dentist, Dr. Samuel Zink. She also assisted during the procedures, holding babies down while Dr. Zink cut their numbed mouths with a laser, according to a recent podcast interview and interviews with her clients.

Ms. Henstrom’s clients said she charged $150 for attending the tongue-tie release session, with optional follow-up visits. Parents said Dr. Zink’s fee was usually about $600. Insurance rarely covered the costs.

Dr. Zink did not respond to requests for comment.

Several of Ms. Henstrom’s clients said that when they expressed trepidation about the releases, she warned that untreated tongue-ties could lead to learning disabilities, scoliosis and sleep apnea.

Lauren Lavelle hired Ms. Henstrom to help with breastfeeding before giving birth to her daughter, June. Without even meeting the 3-day-old baby, Ms. Henstrom warned that, absent laser surgery, “she will never breastfeed,” according to Ms. Lavelle. “She will never eat solids.”

Two days after Dr. Zink performed the procedure, Ms. Henstrom visited Ms. Lavelle’s home and swept her fingers around June’s sore mouth. After that, the baby’s crying intensified and she began clawing at her face. Ms. Lavelle took her to the emergency room, where she said a doctor asked how such a tiny baby had such a large wound in her mouth and gave her pain medication.

Ms. Lavelle said the experience made her question her ability as a mother.

Several other parents said Ms. Henstrom also placed her fingers inside their babies’ mouths to prevent the tissue from reattaching, and she instructed the parents to do the same every six hours.

There is no research supporting the use of such techniques, which some specialists said can cause babies to fear eating because they associate their mouth with pain.

Courtney Wambeke tried to keep up with Ms. Henstrom’s instructions, prying her fingers into her daughter’s clenched mouth. But at a follow-up appointment, Ms. Henstrom said the tongue-tie had reattached. Ms. Wambeke was shocked when the consultant reached into the crying baby’s mouth and broke open the wound with her finger.

Last summer, an employee at St. Luke’s contacted the Boise police department, asking officers to check on the well-being of a 2-month-old who was being treated “for injuries from a tongue-tie,” according to a police report. The baby had lost weight “due to pain during eating.”

Ms. Henstrom had recommended the procedure and later “put her fingers in the infant’s mouth to manipulate the area recently operated on,” the police report said.

The investigation did not proceed, according to the report, because the baby had recovered and the parents said they were satisfied with Ms. Henstrom’s care.

It wasn’t the first time that health care workers had raised concerns about her.

In 2018, Ms. Henstrom worked part-time at a Boise midwifery practice. Soraya Mazloomi, a doula who also worked there, said several mothers complained about Ms. Henstrom’s pressuring them to get surgery for their babies. She was encouraged to leave. (The practice, Treasure Valley Midwives, is under new management, and a representative declined to comment.)

Most states, including Idaho, do not regulate lactation consultants. But more than 19,000 of the consultants have credentials from the International Board of Lactation Consultant Examiners. That group has received at least three complaints about Ms. Henstrom since 2020.

Kathy Strickland, a pediatric physical therapist, filed one that February. “I was getting referred to parents who were uncomfortable, who went in for follow-up and said it was traumatic, that she pushed so hard on their baby’s mouth,” she said in an interview.

Later in 2020, Ms. Lavelle also complained to the board, describing how she had been traumatized by her daughter’s tongue-tie release.

The lactation board, which reports its disciplinary decisions, has not taken action against Ms. Henstrom. A spokeswoman for the board, Susan Brayshaw, declined to comment on the complaints, citing a policy of confidentiality. “Some complaints take significantly longer than others due to the nature of the allegations and related investigations,” she said.

Since 2002, the board has revoked the certifications of only three lactation consultants.

Ms. Lavelle also filed a complaint against Dr. Zink with the Idaho board of dentistry. The board collected medical records and statements from Ms. Lavelle and Dr. Zink. Dr. Zink told the board that June’s procedure was “uneventful” but that an extremely small percentage of patients do not respond well to the procedure. He said none of his hundreds of other tongue-tie patients had previously complained.

The board’s executive director informed Ms. Lavelle via email that the group “didn’t feel that further investigation was warranted.” It found that Dr. Zink was not at fault.

Late last year, Ms. Henstrom recommended tongue, lip and cheek tie releases for an infant named Vivi. Sitting in Dr. Zink’s waiting room a few days later, Vivi’s mother, Aubrey Nobili, could hear her baby’s screams over the muffling hum of a noise machine.

When Ms. Henstrom brought Vivi back into the room, the wailing infant couldn’t catch her breath. Ms. Nobili pulled her daughter close and smelled charred flesh.

Vivi never breastfed again.

Six months later, a specialist at St. Luke’s assessed Vivi because she was having difficulty swallowing and would sometimes choke while drinking from a bottle. The specialist wrote in her medical records afterward that the problems were “likely due to” the laser surgery.

Ms. Nobili is a stay-at-home mother, and her husband, Ryan, works at Costco. They have four other young children. They said they ran up more than $5,000 in credit card debt paying for Vivi’s feeding therapies.

She turned 1 in November. Her family decorated their home with red and pink balloons and dressed her up as a strawberry.

Only one thing was missing: a birthday cake. Vivi still can't eat solid food.

https://www.nytimes.com/2023/12/18/health/tongue-tie-release-breastfeeding.html

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