Tuesday 20 March 2018

Little Caolan (8) born with half a heart is thriving after life-saving operation

Little Caolan Ward may only have 'half a heart', writes Áilín Quinlan, but is now thriving since his latest operation

Eight-year-old Caolan Ward was diagnosed with a congenital heart defect at nine-weeks-old. Photo: Shane O'Neill.
Eight-year-old Caolan Ward was diagnosed with a congenital heart defect at nine-weeks-old. Photo: Shane O'Neill.

When Caolan Ward celebrated his eighth birthday at the family home in Donegal last month, his mum wrote this message on his card: "It's been a rollercoaster for the past eight years; let's just cruise for a while now!"

And Caolan knew exactly what she was talking about - since his birth in 2008, the plucky schoolboy has had four serious heart operations, two of them involving open-heart surgery.

Caolan was born with a congenital heart defect - the medical term for which is Tricuspid Atresia and Hypoplastic Right Heart.

It's a form of congenital heart disease where the right atrium and right ventricle are underdeveloped, and which, in turn, means that only two of Caolan's four heart chambers are functioning. In other words, his heart is only working at half capacity.

Read more: The day I died on the pitch at five-a-side- 'My friends were convinced they’d be going to a funeral'

No members of his extended family nor his three siblings have the condition, which was picked up when he was just nine-weeks-old by the family's GP, who expressed concern about Caolan's significant heart murmur during a routine examination.

The family were waiting for an appointment at the local hospital when, the very next day, his mum Jennifer noticed Caolan was struggling to feed.

His lips were blue.

Worried, she phoned the GP and Caolan was brought to the local hospital where he was seen by a paediatrician who decided the baby had such a serious cardiac problem that he was immediately rushed by ambulance to the Royal Children's Hospital in Belfast with a doctor, nurse and paramedic in attendance.

"We got a very big fright," recalls Caolan's dad, Connor, a pharmacist in St Johnston, a town on the Donegal-Derry border.

Almost immediately, Caolan had a major operation, the first of four surgeries, which continued until the last one in February of this year. These included two open-heart surgeries.

"There was a significant problem getting oxygenated blood to his lungs," says Connor. "He had low oxygen levels in the blood. You'd notice that he'd have blue finger tips, toenails, nose and lips."

Caolan's energy levels, Connor recalls, were also lower than those of other children and as the little boy grew and participated in normal childhood activities, such as running and football, his parents noticed he would tire very quickly.

"He had to be very careful playing sport. We encouraged him to participate but at the same time, he had to know when to stop and if he felt tired, he was allowed to stop playing."

Caolan also missed a lot of school - about 25pc of term time, Connor estimates - because of tiredness, hospital appointments, reviews and sickness, as he was more prone to chest infections than other children.

It wasn't just Caolan who bore the brunt of this debilitating condition. His mum Jennifer, a qualified occupational therapist, had to leave her job to care for him once his condition was diagnosed.

"It's a full-time job managing GP and hospital appointments, monitoring his oxygen levels and being on call to the school," explains Connor, and, as Caolan is also on Warfarin since his last open-heart surgery in June 2014, he has to be continually monitored.

Read more: Grieving Mum of GAA star Cormac McAnallen: ‘We had never heard of Sudden Adult Death Syndrome’

The Warfarin was prescribed to stop blood clots and it is a medication Caolan, now in third class at primary school and a passionate lover of rock music, may be on for life. "He has to be monitored to ensure that his clotting factors - which ensure the proper consistency of his blood - are normal," Connor explains.

"Being on Warfarin also means he's prone to bruising and this is something we have to be aware of."

However, his last surgery, which took place in Our Lady's Children's Hospital in Dublin's Crumlin last February, gave Caolan a new lease of life. The operation closed a hole which had been deliberately left open in his heart to help encourage blood flow.

Closing it, however, meant that his oxygen levels rose significantly - from about 73pc to 96pc. Connor says the young Star Wars fan now has a lot more energy and his lips and finger nails are pink, just like everyone else's. He's also able to participate more fully in games and sports, is attending soccer camp and taking golf lessons, which he enjoys enormously.

Read more: Irish mum on having a child with Cystic Fibrosis: 'Sometimes I want to cry but where's that going to get me?'

However, Connor adds that, at the end of the day, the young Newcastle United fan is effectively still operating on "half a heart" and if any of the up-to-now successful medical or surgical interventions start to fail, down the road the family may have to consider the possibility of a heart transplant.

"However, on the plus side, I know of children in the US who had the same heart condition and who never had to have a heart transplant, so it is a matter of wait and see. Currently, he is in the best health he has ever been."

It meant a lot to Connor when Life Pharmacy group - of which Connor's business is one of about 60 members - decided to make the Irish Heart Foundation its Charity of the Year 2016.

The financial support which came with the decision has enabled the charity to offer an expanded helpline service, along with a new Freephone number - 1800 25 25 50 - to support the many thousands of people affected by heart disease and stroke in Ireland each year.

"It means a lot to me that my colleagues are behind this initiative and are supporting it - it's not just about the financial support, but it's also about knowing that every Life Pharmacy in the country is behind us," says Connor. "This experience over the past eight years has underlined to us the importance of people having access in a timely way to information that is clear, accurate and informed."

Back in the Ward family home at St Johnston, Jennifer's birthday message to her son is already coming true - life is more settled now that Caolan's oxygen levels are so close to normal.

"Obviously, as Caolan grows and gets taller, he will have to have a review every six months of his medication and every year we'll have to go to Dublin to have his heart pressure checked."

And yes, it's possible that a heart transplant may await the little boy at some point down the road - but if it does become a reality, it probably won't happen until Caolan is at the least in his twenties, by which stage, Connor says, scientists will hopefully have perfected a working mechanical heart:

"Universities in America have developed an artificial heart which is working well in trials."

Help is just a phonecall away

The Irish Heart Foundation now offers an expanded Helpline service and a new Freephone number-1800 25 25 50-to support the many thousands of people affected by heart disease and stroke in Ireland each year.

Heart disease and stroke are the number-one cause of death and disability in Ireland, with 27 lives lost and almost 300 new cases diagnosed every day.

Calls to the National Heart & Stroke Helpline are now free of charge, with longer daily opening hours, evening opening, and plans in the pipeline to develop an online helpline service later this year.

The helpline is staffed by trained specialist nurses, so callers can be assured of expert one-to-one advice and support, in full confidence, and all completely free of charge. The partnership means:

Calls can now be made from any landline or mobile in Ireland free of charge to the new number- Freephone 1800 25 25 50;

Immediate extended daily opening hours, with the service now operating daily from 9am to 5pm;

Late evening opening until 7pm on Thursdays, to be expanded to other evenings later in the year

A new dedicated direct access email helpline-helpline@irishheart.ie

An expanded digital presence, with the development of a Helpline Nurse Online Live Chat service, and moderated online forum, to be launched later in 2016

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