Breastfeeding: Mothers are repeatedly told breast is best - but what about the lack of support when babies have tongue-tie?

Lack of diagnosis and medical support can cause intense worry for parents during those crucial early weeks of breastfeeding as they are left thinking "Why is my child not getting what they need?"

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Everyone tells you newborns do nothing but eat, sleep and fill their nappies. But in the first few days my son quite literally ate and slept, beating my shoulder with his little head in desperate frustration demanding to feed continuously, nodding off with the effort of marathon four-hour breastfeeding sessions. He lost weight, he was unhappy and I, feeling a failure, was a nervous wreck, ignoring nipples that were torn to shreds and persevering despite the pain. Why? Because like 3-10 per cent of babies born in the UK every year, my son had a tongue-tie.

Otherwise known as ankyloglossia, tongue-tie is a congenital condition where the tissue under the tongue (the frenulum) pins it to the base of the mouth, inhibiting movement. It can affect a child’s ability to latch onto the breast and might impact later speech development.

Last year the National Childbirth Trust launched a campaign asking the government to provide better services for parents of tongue-tied babies. Lack of medical support, not to mention diagnosis, can cause intense worry for parents during those crucial early weeks as they are left thinking "Why is my child not getting what he needs?". And with current NHS provisions differing hugely by region, many parents watching their tiny babies struggle to gain weight opt to go private rather than face delays in receiving treatment.

If tongue-tie, which varies hugely in severity, hasn’t resulted in feeding problems then most health professionals will advise parents to leave it, as the frenulum will stretch (and might even break naturally) as the child grows. But in some cases, doctors and lactation consultants recommend a very short operation known as a frenulotomy, during which the strip of tissue attached to the base of the mouth is snipped. In newborns this is performed without anaesthesia. A recent study found that 19 out of 20 babies were better able to breastfeed 48 hours after the frenulotomy.

One of the reasons tongue-tie seems to be on the rise is that a generation ago more women bottle-fed, which led to fewer cases being diagnosed.

Breastfeeding is hard work whatever your situation. While 69 per cent of women breastfeed their baby at birth, this falls to 23 per cent by six weeks, with just one per cent reaching the six-month (exclusive breastfeeding) target set by the Department of Health.

So choosing to persevere in the face of tongue-tie is a big deal. And with the latest study suggesting that your child will be more intelligent, better educated and wealthier if you do breastfeed, the pressure is stronger than ever.

Case study

After just 24 hours television producer Kate realised something wasn’t quite right with her baby Ethan. “Each feed would last three to four hours and he didn’t seem at all satisfied. He seemed constantly upset and tired,” she says. “Within two days breastfeeding was so excruciatingly painful it felt like a needle going inside my nipple. It was the most intensely painful thing I’ve experienced outside of childbirth. I was getting blocked ducts as well, because the milk wasn’t actually coming up. I didn’t realise until later, but within that first week I was already getting signs of mastitis.”

Ethan’s tongue-tie was diagnosed by a visiting midwife but had been missed by staff at the hospital where Kate gave birth. His condition was so severe it is what’s known as 100 per cent tongue-tie, meaning that both the front and back parts of tongue are restricted. “You could see the piece of skin on the end of his tongue that held it to the bottom of the mouth. It was really visible, like an archer drawing back a bow, so I was surprised the doctors missed it,” Kate says.

But Kate, who as a result of Ethan’s feeding problems experienced three bouts of severe mastitis, requiring hospital treatment and aggressive antibiotics, had to battle for Ethan’s condition to be resolved. She and her husband repeatedly called the NHS services available in Waltham Forest where they live, the La Leche clinic and NCT helplines before eventually being referred to a tongue-tie clinic at the Royal London. “When we took Ethan into the hospital, on the Tube during Rush Hour, when he was just four days old, all I could focus on was hoping someone could offer us some help, because he couldn't even drink from a bottle properly.

"As soon as he had the procedure there was an instant difference. For the first time since we’d had him I actually saw him engaged, his face was curious about the world and there was a kind of contemplative state that I’d never seen before. And that’s because he’d actually eaten enough. He was like a different baby. It was extremely distressing up to that point. I think my husband almost had a nervous breakdown.”

Unluckily for Kate, and despite an immediate improvement following the first operation, Ethan’s tongue-tie grew back prompting two further spates of mastitis and a repetition of the frenulotomy. “The lovely honeymoon period after the first procedure was about two days. That was it, then the pain returned, and within a week we had to return to the London Hospital and get it done again.”

But after the second snip they tried a new strategy, known as the King’s College treatment, which involves massaging the wound twice a day. “We had to put our fingers in his mouth and massage where the frenulum had been snipped twice a day for six weeks. I think the massaging was absolutely critical for him,” she says.

“At first Ethan was a bit upset by it, but then he got really into it and started enjoying it. Dave [my husband] would do it and Ethan would know what was going to happen and open his mouth with this funny grin and get ready for it. It wasn’t painful for him at all.”

He subsequently began to thrive and the feeding problems eventually ceased. “I think Ethan had to learn how to do it,” Kate says. And nine months on he’s a happy, healthy and extremely smiley baby – who is still breastfed.

“It does sound sort of mad that I kept at it,” Kate says. “But I never lost sight of the fact that I really wanted to breastfeed. I was almost ridiculously dogged about it.”