Tongue tie is a condition that affects around 10% of newborns in the UK, but parents say they can have major problems with services and support.
It occurs when the strip of skin connecting the tongue and floor of the mouth is shorter than usual and can interfere with feeding, although not always.
Two mothers have told the BBC about their struggles trying to feed their newborn babies with the condition.
“Excruciating, unbearable, helpless.”
This is how Clare Sinton, mother of two, described her experience breastfeeding her baby with tongue laces.
Some babies with this condition have difficulty clinging to the breast, but awareness of it as an infant feeding problem can be poor, and a tongue tie can be difficult to spot.
A simple procedure available from the NHS solves feeding problems almost immediately, but some parents are seeking private treatment costing up to £400 to avoid waiting times, or giving up breastfeeding altogether.
Clare has asked why moms “need to fight when you’re at rock bottom and be heard when you know something’s wrong”.
She said: “It’s amazing that nowadays you still have to fight for an evaluation or a diagnosis and then still have to pay for an urgent procedure even though it tears you apart and puts your ability to breastfeed at risk.”
When she gave birth to her daughter, Lily, in October, she immediately knew something was wrong with her diet.
“It was excruciatingly painful,” said Clare, from Westbury-on-Trym in Bristol. “It felt like someone was pulling barbed wire or blades through my nipples.
“I breastfed my son for 19 months so I knew what it was supposed to feel like and it felt wrong from the start.”
Clare suspected that Lily might have a posterior ligament of the tongue, but a midwife at Southmead Hospital couldn’t confirm if she was correct.
Clare, a physical therapist and nutritionist, walked out of the hospital and persevered.
Reminiscing about the first few days at home, she said, “I cried every time I fed. It felt like she (Lily) had a beak like a turtle clinging to me.
“I was beside myself. I was in pain 24/7. I dreaded every meal and Lily could feel the tension in my body.”
By this point, Clare was black and blue from Lily’s attempts at breastfeeding. She started looking for private treatment and found a specialist in Cardiff.
After a brief examination, it was confirmed that Lily had a posterior tongue tie and not long after it was clipped. Clare said that feeding her felt better “immediately” and a few weeks later they were successfully breastfeeding.
The 40-year-old said: “It was really quite emotional. I just sobbed because I was so relieved. It was like a load was off my shoulders, it was amazing.
“These five days [when Lily first came home] were absolute hell. I felt very helpless and I thought this is so unfair that women have to go through what I went through.”
Tongue tie (ankyloglossia) is diagnosed when babies have an unusually short or tight frenulum (fold of tissue) under the tongue.
About half of affected babies need treatment (frenulotomy) for difficulty feeding.
Mothers may stop breastfeeding earlier than planned due to their baby’s difficulties and experience reduced milk production due to ineffective milk collection.
They may experience pain and/or nipple damage and develop mastitis, blocked milk ducts, or breast abscesses.
Source: Association of Tongue Tying Practitioners
Katharine Sharlott, from Southampton, had a similar experience with her baby Quinn after being told by a midwife his tongue movement looked good.
She endured six weeks of difficult nutrition before getting help from a National Childbirth Trust (NCT) lactation consultant and being referred to a tongue tying service.
Katharine explained, “My baby was 75 percent bonded and it got cut off. This initially improved food intake, but actually we still had problems.
“I went back to the lactation consultant and, after ruling out other issues, agreed that there could still be a tongue tie issue. As my baby was older by then there would have been a longer wait to be seen on the NHS. “
Like Clare, she sought private treatment which found that either part of the tie had been overlooked or had been re-attached so it was shared again.
“That finally resolved things, but my baby was almost three months old at the time,” Katherine added.
“Had it not been for the past experience of breastfeeding my oldest, the support of the NCT lactation consultant and the financial resources to hire a private midwife, I don’t think I would have continued breastfeeding.”
Both women are calling for midwives and health visitors to be better trained to diagnose tongue tie.
Clare added: “There should be someone judging it from the start. It shouldn’t be a wait and see thing because no mother should have to go through what I went through – it’s inhuman.”
dr Paul Mannix, Clinical Director of the North Bristol NHS Trust for Women and Children’s Health, said: “It is so important that mothers have early breastfeeding support which is why all our midwives are trained to help with this, including finding tongue tie.
“Having spoken to Ms Sinton, we regret that her experience does not reflect this and will ensure all staff are aware of the support available for mothers who raise tongue tie concerns.”
The Royal College of Midwives (RCM) said training to support women whose babies are having trouble latching onto the breast, possibly due to tongue tie, is included in midwifery training. Additional training is available that includes tongue tie identification, treatment, and support.
Michelle Lyne, RCM Education Advisor, said: “There is clearly a need for more research on the tongue tie so that a definitive definition of what it is and when it is present can be agreed so that evidence-based guidelines for support and treatment can be developed.
“Often babies with a tongue tie have no symptoms, and it can resolve spontaneously over time. It is also common for problems not to become apparent until contact with the midwife has ended, usually around 10 to 14 days after birth.
“When recognized, the focus is on breastfeeding support for the mother.”
She added evidence of further treatment, such as cutting a tight frenulum, is slim and generally a last resort as sometimes even serious cases do not affect nutrition – so mothers and their babies must be looked at individually.
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The NCT has called for more research into the best care for babies with suspected tongue ties and a unified NHS service across the country.
Joanna Daniels, NCT director of breastfeeding and infant nutrition, said: “There is no common agreement among tongue band dividers on how the procedure is performed or how far the membrane should be divided. This means that the services offered by different healthcare professionals are different.”
Vicky Jordan of the Association of Tongue-Tie Practitioners said: “Healthcare professionals’ awareness of the tongue-tie limitation is not universal and this sometimes results in the tongue-tie limitation being overlooked and/or parents being told that your baby doesn’t. t have a tongue tie restriction.
“Infant feeding and frenulotomy services vary across the country, leading to inequalities in access to appropriate treatment.”
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