‘I just wanted to feed my baby:’ Calls for fair and free access to tongue-tie services

Some parents are having to wait up to five months for a simple but significantly effective procedure for babies born with tongue-tie, as ITV News' Amy Welch reports

There are calls for fair and free access to tongue-tie services after an ITV investigation found some families are having to wait as long as five months for a division for their babies.

Freedom of Information requests sent to all NHS England trusts across the UK show an average wait of two weeks but NHS data reveals that if your baby isn’t treated before you leave the hospital that average jumps to nine weeks. 

Thousands of families are therefore turning to private practitioners and are being forced to pay hundreds of pounds for a procedure which charities say should be free. 

Thousands more can’t afford to pay and say they’ve had to abandon breastfeeding earlier than they wanted because of feeding difficulties caused by tongue-tie. 

What is tongue-tie?

A tongue-tie is where the strip of skin connecting the baby's tongue to the bottom of their mouth is shorter than it should be.

Some babies who have tongue-tie do not seem to be bothered by it. In others, it can restrict the tongue's movement, making it harder to breastfeed. And in some cases it can also affect bottle feeding. 

It’s not known what causes tongue tie but 1 in 10 babies are born with one and around half may need a division which means cutting the tissue beneath the tongue.

If you're breastfeeding your baby and they have tongue-tie they may:

  • have difficulty attaching to the breast or staying attached for a full feed

  • feed for a long time, have a short break, then feed again

  • be unsettled and seem to be hungry all the time

  • not gain weight as quickly as they should

  • make a "clicking" sound as they feed – this can also be a sign you need support with the positioning and attachment of your baby at the breast

Tongue-tie can also sometimes cause problems for a breastfeeding mother. Problems can include:

  • sore or cracked nipples

  • low milk supply

  • mastitis (inflammation of the breast), which may keep coming back

What do mums say?

When we meet Charlie Clough her baby is only two days old but she’s in agony.

Ted is struggling to latch and breastfeeding is becoming increasingly difficult. 

Her local hospital had told her he has a suspected tongue-tie but can’t tell her how long she’ll have to wait for a division so she’s come to a private practice in Greater Manchester.

"From the first feed that I ended up getting really sore because he wasn't latching properly. I’ve already nearly tried to give up breastfeeding and I just want to be able to feed him."

The private clinic confirms Ted does have a tongue-tie and decides to carry out a division at a cost of £200.

There aren’t any nerve endings in the tongue so they don’t believe it hurts the baby.

Ted is swaddled and it takes just a few seconds before he’s handed back to Charlie for a feed. 

But what if you don’t have £200 spare? 

Kate Lui’s son Joon was also born with tongue-tie. She was told the NHS wait would be at least six months but didn’t have the money to attend a private clinic.

Joon struggled to latch and Kate wasn’t able to carry on breastfeeding and ended up bottle feeding instead. 

"I was heartbroken really as I always thought the best way to bond was to breastfeed and I just felt guilty that I couldn’t get that bond."

Now he’s three and still has a tongue-tie which she worried could be the cause of some of his speech difficulties. 

The Association of Tongue-Tie practitioners chairman, Luci Lishman, says the lack of funding and training impacts on treatment availability.

Why are the wait times so varied? 

In some places the wait for a tongue-tie division is one a day, but in others it’s more than 20 weeks.

In Wolverhampton all babies are treated within a week. But down the road in Dudley the longest wait is 22 weeks.

And the NHS England data tells us that of the 22 thousand babies diagnosed in the last year only 3,000 ended up having the procedure through the NHS.

So why is this?

The Association of Tongue-Tie practitioners is a group of tongue-tie practitioners from both NHS and independent sectors who aim to increase awareness about the effects of a tongue-tie restriction on babies.

Their chair Luci Lishman says the main issues are funding and training as most midwives, healthcare professionals and even doctors aren’t trained to spot or treat a tongue-tie.

And she believes more trained professionals are needed to prevent a backlog of mum’s waiting for their babies to be seen. 

Is a tongue-tie division always the answer? 

Experts say with the right infant feeding support some mums are able to continue breastfeeding even if their baby has a tongue-tie and that a division shouldn’t be seen as a quick fix. 

We met baby Rose and her mum Ellie Martin at the tongue-tie centre in London.

It was set up by Carmelle Gentle who wanted to bridge the gap between NHS and private practice by being one of the only places in the country offering a donations clinic which means families who can’t afford to pay don’t have to. 

After being told the NHS wait could be as long as six months Ellie paid £300 for Rose’s tongue-tie to be divided when she was six days old. But she wasn’t offered any aftercare and it didn’t properly heal. 

"I remember feeling like a failure because I felt like this is my whole identity at work. I was in a really bad way after the birth.

"I was not in a good mental state and then I couldn't feed my baby like I wanted to, and then I'd cry and she’d cry and it was just a really dark time. I just wanted it to be right. I just wanted it to work. I just wanted to feed my baby."

She’d struggled to find the funds for the first appointment and couldn’t afford to pay privately again so now she’s being treated at the Tongue-Tie Centre.

Manager Carmelle Gentle offers exercises to help free up tongue movement and says more investment is needed in infant feeding support.

What do the Government and the NHS say? 

The government say they’ve spent £50million on infant feeding services But babies aren’t routinely checked for tongue-tie and while midwives can offer support they can’t actually carry out a division.

A spokesperson for the NHS said: "all midwives area trained to support women whose babies are having difficulties because of tongue-tie."

"We expect local NHS teams to work with parents to understand their concerns so they can offer responsive, high-quality care for this issue and learn from each other to reduce variation.”

A Department of Health and Social Care spokesperson said the government wants "every baby to have the best start in life and are committed to offering support where conditions like tongue-tie make it harder to breastfeed."

The government claims to be investing £300 million in Family Hubs and Start for Life services, including £50 million for infant feeding services to improve access to tongue-tie treatment.

"This is increasing the range of advice and specialist support available to mothers and families about breastfeeding, and providing more opportunities across the country for parents to access face-to-face, virtual and digital infant feeding support whenever they need it," the spokesperson added.

Where can I find help?

Only registered healthcare professionals who have received proper training in tongue-tie division should perform this procedure. 

The Association of Tongue-Tie Practitioners has a list of locations where tongue-tie can be divided.

The National Childbirth Trust support line offers practical and emotional support with feeding your baby and general enquiries for parents, members and volunteers: 0300 330 0700.

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