UPDATE – Now with more than 6,400 signatures, Kylie is speaking to the select committtee in February 2017.

Waikato mother Kylie Hickey has received the support of thousands of people who have signed her petition.

She created the petition in the hopes of getting the Ministry of Health to revisit how tongue and lip ties are diagnosed and treated in New Zealand.

“Ultimately they (Ministry of Health) need to recognise tongue tie as a potential impediment to breastfeeding and they need to look into the less than average systems in place that currently address the issue. “There needs to be wide spread education, coherent diagnosis, a timely response to fixing it, and sufficient support services following any procedure,” Hickey said.

The petition was inspired by Hickey’s own experience in her struggle to breastfeed her son Kale, 1, when he was born.

Kale was diagnosed with tongue tie, a piece of tissue connecting the tongue to the floor of his mouth. “Can you imagine the heartbreak when you get told ‘breast is best’ – I felt like I had failed as a mother in the first 24 hours. Imagine your baby crying in your arms and a staff member telling you ‘he’s hungry, he’s hungry, maybe we should give him formula,” Hickey said.

Mother of two, Emma Darke, 31, is one of many parents who have signed Hickey’s petition. Darke experienced breastfeeding issues with her daughter Chloe, 3, who was unable to latch on from the day she was born. “I had excellent support from my midwife who sourced donor milk for me to give as top-ups while I built up my own expressed supply and saw a lactation consultant every few weeks. Yet despite this, her tongue tie was not picked up until she was seven weeks old,” Darke said.

Chloe had a procedure done to release the tie which involves clipping or lasering. Darke said the release helped but Chloe still seemed hungry. She was encouraged to seek advice from a lactation specialist. A Hamilton lactation specialist recognised that while the anterior tie had been released, a posterior tie and a lip tie was still present and had to be again lasered.

“Education is key – this really needs to be discussed in a lot of detail in antenatal classes and pregnancy literature so woman can be forewarned and if they suspect their baby may be affected, they know where to turn and can deal with it immediately,” Darke said.

Hamilton mother Jacqui Dawson, 28, agrees there needs to be more information about tongue and lip ties available to parents. “This is information that should be available to every breastfeeding mother in the country,” Dawson said. Dawson’s son Scotty, 3, first took to breastfeeding like a “duck to water” – no initial problems, he was feeding well and gaining weight. But when a friend told Dawson that their child had a tongue tie, she hadn’t heard of it before so she “googled it”.

It was then that she discovered photos of upper lip ties that looked similar to her son Scotty’s mouth, who at 6 months old would feed anywhere from 45 minutes up to three hours. By nine months old, Scotty’s top teeth had come through so his one hour feeding times became excruciating for Dawson.  A Karitane nurse from Plunket referred Dawson to Old Villa Dental to diagnose the tie.

“He was 10months to the day that we got the revision done. It was really tough. He was tightly swaddled and we had three people holding him down due to his sensitive nature and age,” Dawson said. The procedure was quick and Dawson noticed a change immediately. Scotty successfully latched on straight away and Dawson began breastfeeding without pain.

“If I had access to more information (about tongue and lip ties) many of our problems could have been avoided – frustrations at meal times, constant ear infections, repeat antibiotics, months of marathon feedings, poor sleep and of course a traumatic revision at such a huge point of his physical development,” Dawson said.

The Nurture Centre’s Lactation Consultant, Anne Cullen said the tongue and lip tie petition is great as it brings light to something that needed attention.

“We need health professionals to come up with clear and uniform diagnostic criteria because worldwide and certainly in New Zealand, we don’t have that. So we don’t have a clear understanding of how to diagnose in the first place,” Cullen said.

She said the problem with diagnosing is the waiting period to be able to see a health professional, the cost to families and travelling to get it done. After the diagnosis has been made and the procedure is done, Cullen said getting follow up care afterwards is important as sometimes the tissue can grow back.

“[Tongue and lip ties) are not a fad, it’s a real issue and we need to do something about it,” Cullen said.