For Claire Johnson-Creek, memories of the precious first few months spent with her baby should be filled with joy – but they are also marred by recollections of pain and tears of frustration.
Claire’s son Felix was diagnosed with a common mouth defect known as tongue tie minutes after his birth in January.
The condition, which affects up to one in ten infants, is caused by the strip of skin connecting the tongue to the floor of the mouth being shorter than usual, but it can be corrected in a painless ten-second procedure.
For Claire Johnson-Creek, memories of the precious first few months spent with her baby should be filled with joy – but they are also marred by recollections of pain and tears of frustration. She is pictured with her husband, Andrew Johnson-Creek, and baby Felix
However, Claire and her husband Andy were never told about the operation and, as a result, trying the breastfeed her newborn became an agonising experience for Claire. Felix could not latch on or move his tongue properly, and he constantly bit her.
‘The pain was awful,’ she recalls. ‘I’d be gritting my teeth to get through it and resented Felix for wanting to feed. It was a horrible feeling.’
It was only after visiting a private clinic in February in desperation that Andy, a senior accounts manager and Conservative councillor, and Claire, an editor, were told about the corrective procedure, known as a frenotomy.
As Felix’s tongue tie was so tight, it would very likely have caused a future speech impediment had it not been addressed.
After the £140 procedure, carried out without anaesthetic because there are few nerve endings in the area in babies, Felix was able to breastfeed almost immediately.
Having witnessed his wife’s experience, Andy, 30, has now started a petition calling on the NHS to issue a national policy directive and provide a trained tongue-tie practitioner in every maternity unit, so that the condition can be corrected before parents and babies are discharged from hospitals.
The petition has attracted almost 100,000 signatures already.
‘The NHS allows trusts and hospitals to deal with ties as they see fit,’ says Andy. ‘Some do it immediately, some by referral, some empower midwives and nurses to do it, others allow only specialist doctors.
‘We believe that because Felix was a normal weight, he was not deemed a priority, so we were never told about frenotomy.’
Government statistics only record tongue ties that the NHS has corrected, but not all the people who went private. ‘The numbers could be way higher than the Government claims,’ says Andy.
‘It was horrible watching my wife and baby going through avoidable trauma. I am angry that we were pressured to breastfeed by the NHS, but nothing was being done to make that easier.
‘I was also astonished at how quick, easy and painless the corrective procedure is. Tongue tie is bad for the baby, awful for the mum and, in extreme cases, it can tip mums into post-natal depression.’
While Claire and Andy believe all tongue-tied babies should be treated at birth, the subject is a controversial one.
It was only after visiting a private clinic in February in desperation that Andy, a senior accounts manager and Conservative councillor, and Claire, an editor, were told about the corrective procedure, known as a frenotomy
Sarah Oakley, breastfeeding consultant in Cambridgeshire and chairwoman of the Association of Tongue Tie Practitioners, explains: ‘A large percentage of the medical profession deny that tongue ties exist or cause a problem. Even when a baby has a frenotomy and is able to feed better immediately afterwards, some paediatricians claim it is just a coincidence.’
Retired consultant paediatric surgeon Mervyn Griffiths, formerly of Southampton General Hospital, says frenotomy has been practised for centuries. ‘Midwives used to go round with sharpened thumbnails so they could cut tongue ties at birth. But the practice started to die out in the 1950s because medical opinion changed to encourage mothers to bottle-feed.’
AT the same time, there was a drive to spare children from unnecessary operations. Mr Griffiths was the first paediatric surgeon in the UK to regularly perform frenotomies on newborns in the 1990s and his research, published in the journal Paediatrics And Child Health, showed the procedure was effective. NHS guidance now supports the use of frenotomy in infants.
But some doctors, including Professor Alistair Sutcliffe, a paediatrician at UCL Hospitals in London, continue to have concerns.
‘At the moment it’s an epidemic, with everyone saying, “My baby is tongue-tied,” ’ he says. ‘But many I’ve examined aren’t, and with support they go on to breastfeed well. People are too ready to diagnose it and to offer a frenotomy when it’s not indicated.
‘Not all breastfeeding difficulties are caused by a tongue tie, and not all apparent tongue ties cause a problem. ‘I am also concerned about how it is being carried out in the private sector, where there is a conflict of interest.’
Prof Sutcliffe is calling for a large-scale trial to look at whether frenotomy is helpful for tongue-tied infants. ‘There isn’t currently strong evidence either way – too much is anecdotal,’ he says.
‘There are a number of issues here, including the support for breastfeeding mothers being inadequate and a human tendency to look for a quick fix.’
Despite this, Andy is determined to change NHS policy. ‘No mum and baby should have to go through the experience Claire and Felix went through,’ he says.
‘The pressure put on mums to breastfeed is immense, so if something affects the ability to feed, it needs to be sorted as soon as possible.’