Fotolia

Babies With Tongue-Tie Are Falling Through The Cracks

I wanted my first week as a new mother to be spent in bed with my baby, recovering from childbirth and bonding while we began our breastfeeding relationship. Instead, that time was spent with cracked, bleeding nipples, tears running down my face, and constant self-doubt. I experienced excruciating pain while my daughter tried over and over to latch. Worse, she wasn’t gaining weight or producing enough wet diapers. My midwife insisted that I meet with a certified lactation consultant as soon as possible to figure out the problem. After a three-hour meeting with the consultant, I had my answer: my baby had a tongue-tie.

I’m one of the lucky ones. I had a midwife that knew something was wrong, a lactation consultant who could identify the problem, and a doctor who properly diagnosed and performed my baby’s revision. In the U.S., where many women don’t breastfeed for the recommended amount of time, many because they simply don't have the support, it’s important to make sure that every mother who wants to breastfeed is able to do so. Unfortunately, many healthcare providers are failing to diagnose tongue-ties, forcing some women to turn away from breastfeeding altogether.

Romper spoke to several women whose feeding issues fell through the cracks, and looked at how healthcare providers are failing women and babies.

A tongue-tie (which affects somewhere between 3 percent and 10 percent of infants) occurs when the piece of tissue that connects a baby’s tongue to the bottom of the mouth is too tight for the tongue to be able to move properly, especially during breastfeeding. A baby with a problematic tongue-tie can’t maintain a latch during feeding.

Courtesy of Caroline Campbell

Symptoms can include inadequate weight gain, excessively long and frustrating feeds, gassiness, choking, frequent reflux, and clicking noises while nursing. In addition, mothers may have nipple pain or damage, and problems with plugged ducts and undersupply due to the baby not transferring enough milk. When a problematic tongue-tie goes untreated, babies and mothers both suffer, and breastfeeding can become difficult or impossible. A tongue-tie is released during a simple surgical procedure (usually using a laser) that doesn’t require anesthetic and takes less than five minutes.

While the surgery itself is straightforward, getting a tongue-tie diagnosis is a lot more complicated than it should be.

Elise’s son’s tongue-tie was missed by six different doctors, lactation consultants, nurses, and pediatricians.

That’s where doctors, nurses, and lactation consultants are failing us. Firstly, too many healthcare providers don’t know enough about tongue-ties to properly diagnose and treat them. This is especially true for class 4 tongue-ties, also called posterior ties. In fact, some specialists who treat babies think that class 4 ties are the only type of tongue-tie that create problems with breastfeeding. They aren’t visible on the surface like other tongue-ties, so they’re often misdiagnosed or ignored by physicians.

This means that the most problematic ties are missed because they aren’t seen.

Elise Springsteen, the 28-year-old mother of a baby who experienced choking episodes, even specifically asked her pediatrician if a tongue-tie was possible, but was waved off. She tells Romper, the doctor said, “If he had a tongue-tie it would be visible to the naked eye because it would be heart-shaped.” Elise’s son’s tongue-tie was missed by six different doctors, lactation consultants, nurses, and pediatricians. All the while, he continued to struggle with nursing.

Courtesy of Elise Springsteen

Each professional who works with infants should know about the existence and impact of tongue-ties. However, there are big differences between healthcare providers in different fields. When a baby has trouble breastfeeding, often the first step is to visit the pediatrician. But in a study from 2000 reported on by National Women's Health, researchers found that less than half of pediatricians believed tongue-tie was associated with breastfeeding problems, compared to almost 70 percent of lactation consultants. Since lactation consultants see babies with breastfeeding difficulties, it makes sense that they would know more about the impact of tongue-ties — but many women never end up seeing a lactation consultant if their pediatrician tells them there’s no problem.

That’s what makes this common breastfeeding problem so hard to diagnose: there are two patients. Often, the mother’s pain is ignored if the baby seems to be doing well.

This happened to Jessica Kellison, a 28-year-old mother whose baby boy had a severe tongue-tie that was missed by several healthcare professionals. On a Facebook group for parents of tongue-tied babies, she wrote, “No one cared about any of his symptoms or my extremely sore nipples because he was gaining weight.”

Many other women echoed her story. As long as a baby isn’t in danger, some healthcare providers have no urgency when it comes to the mother’s problems.

I could only assume all new breastfeeding mothers experienced these things and that I must just be overreacting or oversensitive to the issues.

Women are tough. We can take a lot of pain. Recent headlines have highlighted the fact that in medical situations, women’s pain is not taken seriously — and breastfeeding is unfortunately no exception. New moms don’t know what sort of pain to expect with breastfeeding, especially when there’s still a cultural stigma about discussing nursing in general.

Courtesy of Marianne Brady

First-time mom Marianne Brady wrote in a letter to her insurance company in 2013, “I could only assume all new breastfeeding mothers experienced these things and that I must just be overreacting or oversensitive to the issues. I believed if every other breastfeeding mother could do this without complaining, I should just suffer in silence like everyone else.”

Other moms we spoke to told stories of pediatricians rolling their eyes and lactation consultants telling them to just “be patient” and “give it time.” Some women had to wait months or even years to get a proper tongue-tie diagnosis. Since breastfeeding isn’t supposed to hurt, any mother’s pain should get immediate attention from medical professionals.

Healthcare providers are failing women and babies who need help. Doctors, nurses, pediatricians, and lactation consultants need the proper training and a greater emphasis on taking women’s pain seriously. Fortunately, there are some preferred provider lists online for those who are specially trained in treating tongue-ties. In addition, more moms are speaking out about their difficulties with tongue-tie and the medical industry.

Maybe one day tongue-tie will be screened for in hospitals and birth centers during the first few days of breastfeeding. Until then, mothers and babies may still struggle while they wait for doctors to latch on.