"Poor treatment pathways for lip and tongue tie"

I am writing to express concern and dissatisfaction about the process for treating tongue and lip tie in infants born in the Pilbara. My baby was born at Karratha Health Campus late last year and the presence of a tongue tie was noted on the post-birth discharge summary. As an experienced breastfeeder, having nursed two children prior to this, it became clear to me that my baby’s tongue tie was causing issues with breastfeeding for both them and I within the first week postpartum.

My partner and I asked about treatment options with the midwife we saw at our Day 5 check, but were not provided with a clear pathway for the tongue tie to be rectified locally, despite this having been a service provided to us by a paediatrician when our older children required it. We were advised that one of the paediatricians may be able to look at it, and a referral was put through to this doctor. When we had heard nothing back after a couple of days, we called to query how it was progressing. We were advised that the referral had been rejected, but were given no explanation as to why. We asked what the pathway would be moving forward and were told there may be a DMO who could assist us with treatment, however they were on leave at the time. We waited for them to return, only to then have to call up again and be told that they could not help us either.

Following this, we asked if there was a visiting paediatrician at Hedland Health Campus that could assist, to help us avoid a trip to Perth. We were advised that this could be an option, but would need to follow it up ourselves. Unfortunately, when we contacted Outpatients at Hedland Health Campus to enquire and book an appointment with one of the visiting paediatricians, we were told that, as I understand it, Karratha Health Campus would not share the initial referral that had been made, and that they would require a new referral from a private GP. As you might appreciate, GP appointment availability is limited in our community, so this further extended our wait time and, in our opinion, really should not have been required, given that the initial referral was made from within the same public health service.

Throughout this whole ordeal, my baby was struggling with feeding efficiency, and breastfeeding was painful for me. Furthermore, the inconvenience of trying to follow up multiple dead ends, and then being required to travel to Hedland with a newborn baby (and our other young children) made an already challenging time even more stressful for our family.

When we made it to our appointment in Hedland, the paediatrician diagnosed both a tongue and lip tie, and determined that it was far more complex than he was able to effectively treat. As such, we were referred to a paediatrician at a private clinic in Perth for lasering. Unfortunately for us, this coincided with the Christmas period, so we then needed to wait even longer for a consultation when this clinic opened again in the new year.

The experience was extremely frustrating, time-consuming, and unnecessarily complex to navigate. There seemed to be no clear diagnostic, assessment or referral pathway for staff to follow, despite tongue and lip ties being a relatively common issue. We consulted with multiple different health professionals who gave different suggestions and opinions, and we found the lack of communication, cohesiveness and advocacy within WACHS Pilbara, and the need to continually call up to find out how things were progressing, to be mentally and emotionally taxing. We strongly suspect that this apparent absence of timely and effective support would result in early breastfeeding cessation for many families and in my opinion, is a likely contributor to the low breastfeeding rate in our region. I believe this outcome is inexcusable and has a significantly negative and wide-reaching health impact.

I hope that by providing feedback, current accessibility to locally-based, skilled health professionals could be improved, and guidelines and processes for working with families with similar concerns could be reviewed to ensure a clear pathway for timely assessment and treatment in the future.