It was supposed to be the happiest day of Sam and Marie Perrins's lives. Things didn't quite work out that way. "Our little boy Tom was born with a unilateral cleft lip and palate.
"To the untrained eye, it essentially looked like he had a huge hole in his face," says Sam, a 36-year-old Englishman resident in Dublin.
"It hadn't been detected during pregnancy. The first we knew about it was literally as he arrived. It was absolutely shocking."
As soon as the baby was born, Sam had planned on rushing from the delivery room and phoning family with the joyful news.
He did have to make some calls. But the information he conveyed was rather more sobering.
"You look forward to saying, 'oh we've had a baby boy or baby girl'.
"Instead you call up and say, 'we've had a baby – and there is something wrong with him'. We were very naive about the whole thing.
"We thought he was born with a 'hair lip'. We had to be told that, actually, it's not the correct term any more."
In Ireland, an estimated one in 1,000 newborns are born with cleft lip or palate (often both). A cleft lip is a divide running from the upper lip to the nose. In the case of a cleft palate, the roof of the mouth has not fused fully, creating a noticeable gap. In both cases, the problem arises early in the baby's development and is as a result of the lip and/or mouth not forming properly.
The causes are generally unknown, though in 30pc of cases the condition is believed to be hereditary.
In addition to the physical aspect, a cleft palate can result in hearing difficulties and impeded speech.
Though the condition has been treatable for decades, early on the corrective surgery could only do so much and children grew up with notable disfigurations, which inevitably affected self-confidence.
Recent advancements, however, mean that, in the majority of cases, cleft and palate procedures correct most of the damage so that, at first or second glance, you might not notice that a person was born with the condition.
"The standard has gone up," says prominent cleft repair surgeon Michael Earley, of Temple Street children's hospital. "[Results] that used to be acceptable no longer are. People want to get to as near normal an appearance as possible and to have the best possible speech."
One of Ireland's leading cleft surgeons – and a keen painter and sculptor in his spare time – Dr Earley goes overseas on average once a year as part of the Operation Smile initiative, repairing clefts in developing countries such as the Philippines (most recently he was in Sebu, the Philippines second city with a population of four million).
"It [a cleft operation] needs the proper set-up and support services," he says. "The real key is good anaesthetics and good nursing behind the surgery. The surgery itself is complex and 'technique oriented'. A high level of skill is required. From the point of view of threat to life, it is a very safe operation . . . It is very complex."
An experienced cleft surgeon should be able to repair a cleft in about an hour, and a palate in about an hour-and-a-half.
Once the shock had subsided, Sam and Marie began to focus on the challenge ahead.
In three months their boy, a squealing bundle not long in the world, would undergo surgery. In the first procedure, his lip would be fixed. Then, a few years later, the palate would be closed.
This brought its own challenges. After a few weeks, the couple had come to terms with the inevitable pain and disappointment.
Looking at Tom in his cot, they did not see a disfigured baby – they saw their beautiful little son. They loved him exactly as he was.
"The repair was a real success. We were stunned when he came back. He was no longer our little boy," says Sam.
"We had gone through this thing of 'wow, our child is deformed' and you have to wrap your head around that. Then you get used to looking at him and he's your boy. After the procedure, he comes back a different person."
Tom is now nearly seven and has two younger siblings, Ben (four) and Lucy (two). He's a happy, outgoing child. Nonetheless, he is cognisant he has a repaired cleft and can be self-conscious about it. Not helping is the fact that, gazed at in the mirror, the slight asymmetry in his lower lip and nose is exaggerated, says his dad.
"His nose is still slumped down at one side. There is a very light scar. It is minimal.
"Mr Earley – he's a magician. The way he managed to fix the lip was astonishing. Whatever criticisms people hear of the Irish health system, our experience has been absolutely fantastic.
'At the moment, Tom has a slight speech impediment around the letter 's'," says Sam, who runs a recruitment consultancy business. "He has hearing difficulties also. Due to the cleft and palate he gathers liquid in his ears more easily than other children.
"There are times he says, 'I wish I didn't have this'. It has affected his life in some ways – his confidence among his friends, for instance, when he can't hear what they are saying. That does have an impact. He is conscious that usually he looks a little different. It doesn't really limit him. However, he is aware of it."
Tom will have his next operation when he has all of his 'adult' teeth – roughly between the ages of seven and nine.
This involves taking bone from the hip area and 'plugging' the remaining gap in the upper mouth.
The procedure helps hold the grown-up teeth in place and steadies the jaw. Further cosmetic work will take place through the patient's teens.
"We tend not to discharge anyone until they are 18," says Michael Earley. "I have often done a lip or nose revision of a patient in their 40s.
That is not unusual. There was one particular case where a boy had just finished [treatment] at 18. The father [also with a cleft] was in his late 40s. He turns to me and says, 'okay, can you do anything for me?' He had a lip revision and looks a lot better."
The most upsetting part of the process, says Sam, was watching their three-month-old baby on the operating table.
"Because of the anaesthetic, they come over as a little bit drunk.
"They panic as they don't feel completely compos mentis. That is quite distressing.
"The hospital is very good. They know how to manage the patients."
The subject of clefts was in the news recently with a villain in the new 'Lone Ranger' movie given a lip disfigurement. Parents of children with cleft lips and palates were incensed. Michael Earley shares their distaste.
"My gut reaction was who on earth had advised Disney to get involved in a project like that," he says.
"They seemed blind to the sensitivities.
"My second response would be to say, 'okay, let's put a positive spin on it and say that the sort of person who was psychologically [traumatised] in that way would have been successfully treated today'.
"In the end, poetic justice seems to have been done as not many people saw the film."