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.