The limitations of specified illness cover may not have been the first thing that struck Cork couple Alan and Marie O’Sullivan when their son Dylan was born. However, in the years since, they have come to realise how cover from birth would have helped them maintain a more normal family life.

Dylan (9) was born at Cork University Maternity Hospital in September 2007 with a heart condition called tetralogy of Fallot. He was diagnosed with the condition soon after birth when he was sent as an outpatient to Our Lady's Children's Hospital, Crumlin for an echocardiogram.

Tetralogy of Fallot is a congenital heart defect involving a number of holes in the heart and is usually treated by surgery in the first year of life. However, Dylan, although a healthy 7lbs 4oz when born, was having difficulty keeping down food and spent the first four months in and out of hospital in Cork.

He had to be fed by a nasogastric feed – a tube through the nose – but when he failed to thrive, he was again referred to Crumlin for further tests. While there he suffered what was diagnosed as a “tet spell” which prompted a rapid response from medical staff at the Dublin hospital.

“When Dylan was in Crumlin, he had a tet spell – sometimes babies who have tetralogy of Fallot will develop deep blue skin and lips after crying or feeding and these episodes are called tet spells and are caused by a rapid drop in the amount of oxygen in the blood,” says Alan, an electrician.

“Dylan got a tet spell in Crumlin and his body just crashed and they brought him for surgery the next day. He was intubated during the surgery and a month later, post-surgery, due to complications, he ended up having to have an emergency tracheotomy.”

Vital nutrients

The tracheotomy involved making an incision through Dylan’s windpipe and more than eight years later, Dylan is still dependent on the tracheostomy (the surgically created hole) to breathe.

“It’s critical for him: he can’t breathe without it and it’s part of him now but if it comes out, it’s all over,” says Alan.

Although he was already struggling to feed prior to the tracheotomy, Dylan was unable to take food orally afterwards. He underwent further surgery to allow him be fed via percutaneous endoscopic gastronomy (PEG), which means he receives vital nutrients through a tube into his stomach.

Dylan was in Crumlin from the age of eight months to 18 months as he underwent the various procedures. He has been back every year except one since for various other procedures as doctors worked to reopen his airway so that he can breathe independently and ultimately communicate.

“Dylan is non-verbal and he’s been up for four operations on his airway. The most recent was to move his jaw forward and the aim ultimately is to get him a voice so he can communicate. We’ll be heading up there again next year for what will be the fifth operation to repair his airway.”

For Alan and Marie from Carrigtwohill in east Cork, the journey they have undergone with Dylan over the past nine years has been an arduous one as they struggle to maintain some sort of normal family life for him and their other children, Ben (11) and Marc (5).

Ancillary costs

While Dylan’s medical needs have been met by the HSE and the staff at both Crumlin and CUH have been excellent, there are ancillary costs to having a sick child.

“When Dylan was in Crumlin the first time as an inpatient, Marie was up there with him all the time. I had gone back to work and Marie would stay with him during the week and I would drive up then on a Friday evening and she would come back home and go back up on Sunday,” Alan says.

“My parents would look after Ben – he was born in 2005 – it was tough trying to juggle everything, with Marie up there during the week and me going up there at weekends, it was hard to keep things going and Marie was forced give up her job to become Dylan’s full-time carer.

"I kept working to try to keep up with the mortgage; we had done an extension to the house the year before Dylan was born and AIB allowed us to split the mortgage and pay interest-only on one of the mortgages which helped.

Critical surgeries

“We had taken out life protection and critical illness cover when we got the original mortgage but it didn’t cover Dylan’s condition because he was born with it; if the policy had covered Dylan from birth, we could have claimed up to €25,000 on it which would have been a huge help.

“It would have meant that we could have got childcare for Ben and Marc, who came along later, and as well as that it would have helped hugely on all the other costs you have. The HSE cover the medical care but there is so much more when you have a sick child.

“You have to stay in Dublin. We were staying in the Ronald McDonald House attached to the hospital but we had to leave that when Dylan got an infection so we ended up staying in the hospital and you have to pay for your room there plus you have living expenses: food, fuel and even parking.

“We would go for critical surgeries with Dylan once a year normally and it would be over €1,500 in two to three weeks, money just gone out of your account on travel, accommodation and food. It’s just like you are haemorrhaging money.

“We were up again during the summer with him and because it was the holidays we had to bring the other kids with us, so we ended up staying in a hotel and there was easily €3,000 gone on that trip. Critical illness cover would have gone a long way towards covering all those sort of expenses.

“But I suppose the even bigger issue was the time: if our policy had covered Dylan’s condition from birth, I would have been able to take more time off work and as a family, we would have been together. You can’t really quantify time and how important that is to a family.”