Strug­gle for tongue tie di­ag­no­sis


After a five month bat­tle to breast­feed her son, Nel­son mum Kate Shel­don is frus­trated with the time it took for him to be di­ag­nosed with tongue tie.

She said it took three months and six vis­its to dif­fer­ent health pro­fes­sion­als be­fore any­one looked inside her son Bodhi’s mouth, a pe­riod which she de­scribes as a ‘‘night­mare’’.

Shel­don’s strug­gle re­flects a big­ger de­bate within the health sys­tem about the preva­lence of tongue tie in ba­bies and the im­pact it has on breast­feed­ing.

A tongue tie oc­curs when the thin piece of mem­brane un­der the tongue is un­usu­ally short. Shel­don said soon after Bodhi was born in April she no­ticed he had a heartshaped tongue, which is a sign of tongue tie.

She said try­ing to ac­cess treat­ment had been ‘‘hor­rific’’ and she had spo­ken to other mums who faced sim­i­lar strug­gles.

She raised the is­sue with her mid­wife who said she would or­gan­ise a re­fer­ral but it never even­tu­ated. In the months that fol­lowed, de­spite rais­ing the is­sue with an­other mid­wife, Plun­ket and her GP, Shel­don said no-one ac­tu­ally looked inside Bodhi’s mouth.

In that time, Bodhi strug­gled to latch to her breast while feed­ing. He de­vel­oped chronic re­flux, bad wind and was vom­it­ing con­stantly. But de­spite the feed­ing strug­gles, he was gain­ing weight and meet­ing de­vel­op­men­tal mile­stones.

Shel­don her­self had sore nip­ples and de­vel­oped eczema from the spilt milk un­derneath her breasts.

The symp­toms she ex­pe­ri­enced also matched what she had read about tongue tie so at 11 weeks, Shel­don took Bodhi to an­other GP for a third opin­ion.

The doc­tor took one look inside his mouth and said he had a se­vere tongue tie and a mod­er­ate lip tie un­derneath his top lip. She made an ur­gent re­fer­ral to Nel­son Hospi­tal but it was de­clined sev­eral weeks later due to high lev­els of de­mand. ‘‘I was pretty much in tears, by this stage I was re­ally strug­gling to feed, and I didn’t want to give up breast­feed­ing.’’

With fi­nan­cial sup­port from her fam­ily, Shel­don de­cided to get the pro­ce­dure done pri­vately. At five months old, Bodhi’s tongue and lip ties were lasered at a den­tal sur- gery and the pro­ce­dure cost around $350.

Shel­don said it had been a push to be heard within the health sys­tem. It wasn’t un­til Bodhi’s weight gain slowed and feed­ing be­came more strained that she felt her con­cerns were taken into ac­count.

Since his tongue tie was re­leased she had no­ticed a huge dif­fer­ence in Bodhi.

‘‘He is a com­pletely dif­fer­ent baby, more set­tled, less gassy, less windy, less spewy. Re­flux was a huge is­sue from when he was born and he is more con­tent, hap­pier and sleep­ing bet­ter.’’

She said the strug­gle to get it ad­dressed made her won­der if health pro­fes­sion­als were ad­e­quately trained to deal with it.

‘‘I think it is pretty ridicu­lous when the Gov­ern­ment is will­ing to spend mil­lions on the breast is best cam­paign when they are not will­ing to check ba­bies for ties and rem­edy them.’’

Nel­son Marl­bor­ough Health as­so­ci­ate di­rec­tor of mid­wifery Deb­bie Fisher said a mid­wife or hospi­tal spe­cial­ist was re­spon­si­ble for as­sess­ing a new­born to iden­tify any con­cerns, in­clud­ing tonguetie.

If any ab­nor­mal­i­ties were iden­ti­fied, a spe­cial­ist re­fer­ral was made for fol­low-up care.

Fig­ures from Nel­son Marl­bor­ough Health showed that there were 11 tongue tie pro­ce­dures com­pleted Wairau Hospi­tal in 2016 and only one at Nel­son Hospi­tal.

Fisher said that was be­cause the ma­jor­ity of tongue ties in Nel­son were cut by a pae­di­a­tri­cian at their pri­vate prac­tice com­mu­nity clinic.

Last month the New Zealand Col­lege of Mid­wives en­dorsed a state­ment which said due to lim­ited re­search about tongue tie re­lease, it could not be rec­om­mended un­less there was a clear as­so­ci­a­tion with breast­feed­ing dif­fi­cul­ties. It fol­lowed a pe­ti­tion to Par­lia­ment last year call­ing for a re­view of how tongue tie was dealt with.

Min­istry of Health child and youth health chief ad­vi­sor Dr Pat Tuohy said while many district health boards had poli­cies in place, there were no na­tional guide­lines on the re­fer­ral process for tongue tie.

Fig­ures show na­tion­ally there were 1408 tongue tie pro­ce­dures done in the pub­lic sys­tem in the 2015-16 year, down from 1742 in the 2014-15.

‘‘Sev­eral tools or sys­tems are avail­able for as­sess­ment and di­ag­no­sis of tongue tie but none of them are uni­ver­sally ac­cepted and used by clin­i­cians.’’

He said tongue tie af­fected around 10 per cent of the pop­u­la­tion and not all ba­bies with the con­di­tion would ex­pe­ri­ence feed­ing prob­lems.


Kate Shel­don with her five-month-old son Bodhi, who was born with the tongue and lip-tie con­di­tions.

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