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'When I couldn't breastfeed I was devastated' - service to improve tongue-tie provision in west Suffolk

PUBLISHED: 12:00 07 April 2019 | UPDATED: 15:35 07 April 2019

Laura Long with Fraser (right) and Edward. After she paid privately for Edward's tongue-tie to be treated she continued to breastfeed him until he was 14 months old: CONTRIBUTED

Laura Long with Fraser (right) and Edward. After she paid privately for Edward's tongue-tie to be treated she continued to breastfeed him until he was 14 months old: CONTRIBUTED

CONTRIBUTED

West Suffolk Hospital is to have a new clinic treating 'tongue-tied' babies who can't feed properly - one mother talks about how the condition affected her child.

Laura Long with Edward, now 18 months old Picture: CONTRIBUTEDLaura Long with Edward, now 18 months old Picture: CONTRIBUTED

A mum has said she felt a “failure” for being unable to breastfeed her first baby who she believes had an undiagnosed tongue constraint.

When Laura Long, from Horringer, near Bury St Edmunds, had Fraser the possibility of him having tongue-tie, also known as ankyloglossia, was not explored by the healthcare professionals around her, and being a new mum it wasn’t on her radar.

She was also struggling with the aftermath of a traumatic birth and now thinks she may have been suffering with a mild case of postnatal depression.

In fact, there was no NHS service at all in west Suffolk for the diagnosis and treatment of tongue-tie so some parents have chosen to get the procedure, known as frenulotomy, done privately at a cost of around £150.

However, following feedback from parents about tongue-tie provision, there is now a weekly consultant-led restricted frenulum clinic at West Suffolk Hospital, and after the restriction is released a supervised feed is undertaken to support breastfeeding.

Mum-of-two Mrs Long, 39, persevered with trying to feed Fraser herself, but it was painful and he was losing weight. In the end, she reluctantly switched to formula when he was six weeks old.

Laura Long with her three-year-old son Fraser. She had hoped to breastfeed him, but believes he had undiagnosed tongue-tie Picture: CONTRIBUTEDLaura Long with her three-year-old son Fraser. She had hoped to breastfeed him, but believes he had undiagnosed tongue-tie Picture: CONTRIBUTED

She said: “With my first I was adamant I was breastfeeding. There was no consideration [to bottle feeding]. I had no bottles or sterilising equipment and when I couldn’t [breastfeed] I was absolutely devastated.”

She added: “I did feel a bit of a failure. When I had to give a bottle I knew deep down it was right. He needed to just be fed in the end and he was so much more chilled.”

When she had her second child, Edward, she strongly suspected tongue-tie - she knew the breastfeeding position was not the problem - but she was told it would take up to four months to see someone and get a diagnosis. That was too long.

She discovered there was a support group in Cambridge, where it was confirmed Edward had tongue-tie, and the procedure was carried out privately in Bury St Edmunds.

“It was literally done in 15 minutes,” she said. “He didn’t cry and there was zero blood.”

Mrs Long went on to breastfeed Edward, now aged one-and-a-half, until he was 14 months old.

West Suffolk Hospital in Bury St Edmunds Picture: GREGG BROWNWest Suffolk Hospital in Bury St Edmunds Picture: GREGG BROWN

She said to have an NHS service in west Suffolk to diagnose and treat tongue-tie was “amazing”.

“If it can help someone else be able to breastfeed and get that looked at quickly, it’s brilliant. I think they would find an increase in the number of people who would breastfeed or would continue to breastfeed.”

What is tongue-tie?

Tongue-tie is where the strip of skin connecting a baby’s tongue to the floor of their mouth is shorter than usual, which can restrict the tongue’s movement, making it harder to breastfeed.

According to Healthwatch Suffolk, available evidence suggests that up to 11% of babies may have the appearance of a tongue-tie and about half of those will have difficulty breastfeeding.

Healthwatch Suffolk CEO Andy Yacoub Picture: ARCHANTHealthwatch Suffolk CEO Andy Yacoub Picture: ARCHANT

Treatment isn’t necessary if a baby can feed without any problems. If their feeding is affected, treatment involves a simple procedure called frenulotomy.

What’s changing?

A lack of trained staff in the west of the county had meant mums giving birth there were less likely to get a diagnosis of tongue-tie.

Healthwatch Suffolk and the West Suffolk Maternity Voices Partnership raised the issue of tongue-tie provision with NHS bodies after people shared their stories about the challenges they had faced in getting a diagnosis, and how this had impacted upon their lives and the enjoyment of becoming new parents.

In response to the feedback, the NHS West Suffolk Clinical Commissioning Group, which funds NHS services, has worked with the West Suffolk NHS Foundation Trust (WSFT) to establish a weekly consultant-led restricted frenulum clinic.

This means that babies born at West Suffolk Hospital, or those receiving postnatal care from midwives, can be referred for the release of both anterior and posterior tongue restrictions. These babies can be up to eight weeks of age.

Referrals to the clinic are made by staff that have received training in tongue-tie assessment. The clinic is supported by either a midwife or a midwifery support worker trained in infant feeding to Baby Friendly Initiative standards.

After the restriction is released a supervised feed is undertaken to help mum and baby to begin breastfeeding.

To support the new service, WSFT has arranged opportunities for NHS staff to be regularly trained in the effective identification of tongue-tie in newborn babies, which is necessary to make referrals.

The new service ‘could improve breastfeeding rates in Suffolk’

Andy Yacoub, chief executive of Healthwatch Suffolk, said: “We are really happy to tell people about this exciting outcome.

“Newborn babies bring dramatic changes to our lives. The first weeks at home can be a very stressful period for both new and experienced parents, particularly if baby is not feeding well or losing weight.

“We are hopeful that this important new service will help to make things a little easier for people and support improved breastfeeding rates in our county.”

Annual data released by Public Health England shows that in 2017/18 47.6% of mothers were still breastfeeding at six to eight weeks in Suffolk, compared to the national average of 42.7%.

Read more: Should there be more breastfeeding support for mums? New figures show decline after six weeks

Mr Yacoub added: “Prior to the establishment of this clinic, there was no service at all in west Suffolk. Parents would either have been referred to Norfolk and Norwich University Hospital for treatment, and may have faced extensive waits for treatment, or they may not have had the opportunity to get a diagnosis in the first place.

“The establishment of the clinic is a brilliant example of how people’s experiences can be a powerful tool to shape and influence our local offer of services. I would like to thank both the West Suffolk Hospital and also our local commissioning groups for responding so positively.”

Lynne Saunders, head of midwifery at West Suffolk NHS Foundation Trust, said: “We are really pleased to be offering this new service to our new families – we hope it will support mothers to initiate and continue breastfeeding when possible, to promote the best start in life for their newborns.

“Alongside our partners at Public Health England we will be reviewing and monitoring the progress of our patients with follow-up appointments.

“I’d particularly like to thank Healthwatch Suffolk and the West Suffolk Maternity Voices Partnership for bringing the necessity for this service to our attention, and working with us to build this new service to accommodate our patients’ needs. We always strive for ways to improve the care we provide.”

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