Our Story

Our first introduction to tongue tie was twenty-seven years ago, when we became parents for the first time. We had both been working on the neonatal unit in Southampton, and when our eldest daughter was born, we were lucky enough to be able to call on people we trusted. When she had lost 10% of her birth weight by day five, lactation consultant Carolyn Westcott came to us, identified tongue tie, and paediatric surgeon Mervyn Griffiths divided it the same day. She went on to breastfeed for a year.

We believed, for a long time, that was the whole story. We had done what needed to be done. She was feeding. We moved on and it was a few years until we thought in any depth about tongue tie again.

Chapter Two

Learning Through Our Own Children

We have six wonderful children. Each one taught us something different, including many lessons learned retrospectively, when it came to our tongue tie journey.

Our second daughter had colic. The relentless kind. She gained weight, she was not unwell, and so there was no pathway to follow. When a baby has a temperature or is clearly unwell, you know what to do. A baby who has been fed, changed, held, and still cannot settle sits outside that framework entirely. We did not look for a clinical explanation because nothing pointed us toward one. We assumed we were not coping well enough. We put it down to the circumstances of life with a new baby (and a house move, part of life with a husband who is a doctor in training) and got through it. It was only much later that we understood her tongue tie had been part of that picture all along.

Our third child showed us what straightforward feeding looks like. We had not known, until then, what that felt like.

Our fourth child was labelled failure to thrive, which now would be called faltering growth or weight. What followed was months of hospital visits and an admission for investigations: overnight pH studies, a barium swallow, a sweat test to rule out cystic fibrosis, and a diagnosis of gastro-oesophageal reflux disease. He was placed on proton pump inhibitors. He continued to vomit significantly throughout his first year. He was so orally defensive from the experience that he refused spoon feeding entirely, which is how we came to baby-led weaning, out of necessity rather than philosophy. He needed palate expansion and significant orthodontic treatment in his teenage years.

We know that the investigations he had were standard practice. But we also know that what he needed was someone to recognise that his oral function was the root of it. That person did not exist in the system he entered. He needed us, and we were not yet ready.

Chapter Three

The Moment Everything Changed

Our fifth baby was born when we were living at the foot of the Wicklow Hills. Feeding difficulties were immediate and significant. We contacted lactation consultant Nicola O'Byrne, who suspected tongue tie but told us there was nobody in Ireland who would treat it. We then contacted Carolyn Westcott in Southampton, who gave us a clear choice: get on a plane, or manage this ourselves. Faced with no other option, we did it ourselves. Justin performed a scissors release with me assisting. Things improved, but not enough. Eventually we persuaded a paediatric surgeon at Crumlin Children's Hospital in Dublin to complete the posterior component of the release. That required a general anaesthetic and an overnight hospital stay. But it made a difference that mattered. For the first time, she could transfer milk effectively. She could feed.

Once we had seen that, we could not unsee it. Justin returned to Southampton and trained with Mervyn Griffiths, the same paediatric surgeon who had treated our eldest daughter years before. He came back equipped. When you know how to make things better, not acting is no longer an option. He was working as a Consultant Paediatrician in Tipperary. He began treating babies in the hospital as he encountered them. Word spread quietly, and before long a lactation consultant in Limerick was ringing to ask could she send a mother and baby. That was when the day ward became involved, and a service that had begun with our own children started to become something much bigger.

Chapter Four

Building the Service We Wished Had Existed

As the service grew, the paediatric nurses, quite reasonably, pointed out that their unit simply did not have the space. Mothers feeding, babies, buggies everywhere. It was not what the ward was designed for. Justin moved to outpatients. The public clinic continued to grow, and when the waiting list became too long to manage, we started a private clinic alongside it. Friday evenings first. Then Saturdays. Then Sundays. Demand kept outpacing space.

The other thing that changed everything was when lactation consultant Claire Bulfin contacted us to offer her services. She brought two further lactation consultants with her, and from that point on every family who came to us was seen by a lactation consultant as part of their care. That was the shift that turned what Justin and I had been doing into something that genuinely functioned as a team. Claire was central to the development of those early years, and the multidisciplinary model we are known for today was built on the foundation she helped us lay.

But we were still running out of space, and we knew that to do this properly, we needed somewhere of our own.

Chapter Five

January 5th, 2017

During the recession that followed the Celtic Tiger, we had converted part of our home into accommodation for medical students on placement. One afternoon, I was cleaning those rooms, racking my brains about where we might find four consulting rooms, a waiting area, and a procedure room in Clonmel. Standing in the fourth bedroom, it occurred to me that I was already in it.

The medical students were moved on. They did later mention that they never got chocolate brownies quite the same as when they had been staying with us.

On January 5th 2017, the National Tongue Tie Centre opened. The priest arrived to bless the clinic while Claire was outside on the driveway with a power washer, clearing the mud left by the diggers who had just finished the car park.

We built it around a feeling, the feeling we had never had when we needed help. When you arrive at the NTTC, you are not walking into a hospital. You arrive to a garden. The mountains are visible. There is coffee on. The space is designed to say: you are safe here, you are heard here, and you are not alone.

We had been those parents. We had felt the inadequacy, the fear, the exhaustion of not being able to meet your baby's needs and not understanding why. We knew what it was to feel dismissed by a system that could not see the problem. We built a place specifically for the family that feels the way we once felt.

Chapter Six

A Pattern Hiding in Plain Sight

Our understanding of this condition is not only clinical. It runs through our own family history in ways that took us years to see clearly.

My father is a historian and photographer, and his archive reaches back to the early 1900s. Looking through those photographs now, we can trace the craniofacial features associated with oral dysfunction across generations: the open-mouth posture, the shadows beneath the eyes, the narrow facial growth patterns. It was there, across our own family, entirely unrecognised for what it was.

We have also come to understand how unresolved oral dysfunction in infancy can shape a lifetime. Poor sleep across the middle years has well-documented effects on cognitive function in later life. My mother has Alzheimer's. Sleep was always a problem for her. We cannot say with certainty that these things are connected, but we think about it. We think about it when we think about the families we see, and we think about it when we think about our own.

We have been learning from our children since they were born, and we continue to learn from them as adults. Some of them have needed further intervention as teenagers and young adults to achieve what we now define as optimal function. That ongoing learning has shaped our clinical approach as much as any course or conference. And it has continued into the next generation. Both of our grandsons were also tongue tied. Each one has added to our understanding of what families experience, and what optimal care needs to look like.

We have also been shaped by loss within our family that we carry quietly. It has contributed to the urgency with which we work, and to the care we take with every family who comes through our door.

It was only when we looked back across all of our children, with the knowledge we had built over those years, that we understood what we had actually achieved with our eldest. We had solved the immediate feeding problem. What we had not done was optimise her function. She still took many hours to feed. As a first baby, I could do that. I could sit with her all day. It was before the age of mobile phones, and Justin went out and bought us a cordless one so he could reach me, because every time he rang, I was feeding and could never get to the phone. She went on to struggle with migraines and needed significant orthodontic intervention.

Good enough, we came to understand, is not good enough at all.

Chapter Seven

Why We Do What We Do

The National Tongue Tie Centre now sees over 1,000 patients annually. Families travel to us from across Ireland and from abroad. We have a team trained to the same clinical standard we hold ourselves to. We have continued to develop our methodology, our multidisciplinary approach, our understanding of prehabilitation, full functional release, rehabilitation, and the lifelong impact of optimal oral function on breathing, sleep, craniofacial development, swallowing, and posture.

The Functional Frenuloplasty technique was pioneered by Dr. Sourish Zaghi. What Justin developed was bringing this procedure to babies and children, becoming the first to use conscious sedation in children from 12 weeks to 12 years, to make it accessible where previously it had not been. His ongoing clinical work has focused on selective fascial release as an integral part of that approach. I work as a Chartered Physiotherapist, IBCLC, and Paediatric Feeding Therapist, bringing an integrated clinical lens to every family we see. Together, we present internationally, contribute to the clinical evidence base to help set standards of care, and continue to push the boundaries of what this field can offer.

But the reason we come in every day is simpler than any of that. It is the mother sitting in our waiting room, frightened and exhausted, who has already been told there is nothing wrong. It is the baby who deserves the chance to feed well, sleep well, and grow well. It is the family who deserves to enjoy those early months instead of surviving them.

We have been that family. We know what it costs when the right help is not there. We have spent twenty-seven years making sure it is.