Our Lady's Hospital is performing surgery on two-day-old babies due to surgical advances but a severe lack of funding continues to put lives at risk. Niamh Kavanagh reports
There is something of a quiet revolution going on at Our Lady's Hospital for Sick Children, Crumlin. Open heart surgery is being carried out on babies as young as 48 hours old. Each year, one in every 100 children born in Ireland has congenital heart disease - that is, born with the disease as opposed to inheriting it. "That's about 600 children a year and we would see all of those children at some stage," says Dr Paul Oslizlok, director of cardiology at the hospital.
Ten years ago, the future for such children was poor - just 50-60 per cent would reach adulthood while some would never make it past their first year. Thirty years ago, only 10-20 per cent of children would survive to adulthood. Now, all are undergoing surgery and 80-90 per cent are reaching adulthood, says Dr Oslizlok.
"The conversations we have when babies are born we wouldn't have dreamt of 20 years ago and it's giving these children and their parents real life and real hope for the future. It's not last-ditch, experimental surgery," he says.
In the past decade, giant leaps in technology and skills have changed the future for children with congenital heart disease - it has given them a future.
A new cardiac catheterisation laboratory is to the forefront of the revolution, facilitating Dr Oslizlok and his colleagues to perform procedures like hole-in-the-heart cases, whereas previously these would have necessitated open heart surgery.
Now about 200 children a year undergo interventional or corrective treatment in the lab without ever having to go near the operating theatre and their recoveries are quicker. The rest, about 350, undergo either open heart or closed heart surgery in one of the new, impressive seven theatres in the otherwise cramped, patched-together hospital that is struggling to cope with a threefold increase to 22,000 inpatients annually compared with 7,000 when it first opened in 1957.
Most surgery is tailor-made for the child because there are hundreds of different types of congenital heart disease, says heart surgeon Mr Freddie Wood. Some 60 per cent of surgery is carried out on babies under one year old whose "hearts would be smaller than a strawberry," he says. Some operations are incredibly complex, such as ASD - a condition where the arteries in the heart are the wrong way round and have to be switched. These children need at least four operations. Also, some Down's Syndrome children are born with complicated heart defects and need several operations.
With at least 550 children a year undergoing corrective surgery, and with a busy outpatients unit, the pace for the cardiac team is frenetic.
"We always run at a maximum," says Orla O'Brien, head of the 150-strong cardiology nursing staff, walking through the 18-bed St Theresa's ward, where bright-eyed babies with a plethora of wires attached to their bodies peer out of tiny beds. The other cardiac ward, St Brighid's, has 25 beds for children over 18 months but it also deals with other non-cardiac patients.
For children, perhaps the figure that features most prominently in their lives is a small, green character named Kermit the Frog. He graces the pages of a book designed to take them through every step of their surgery. Kermit's steps are explained by two play specialists who are, probably, the most important component of the team in helping the children deal with their illness.
The play specialists were initially funded by the parents' lobby group, Heart Children, before being funded by the State. Four nurse specialists provide a vital role in supporting the parents by liaising with them, explaining medical terminology and answering any forgotten questions.
"The main difference between operating on a baby and an adult is size," says Mr Wood. "An older child or adult has more mature organs and they can tolerate shock more than a few-day-old infant - if they're in shock for 15 minutes they're dead so the margin for error is very small. The diagnosis has to be 100 per cent correct."
Even so, some children do die - 5.5 per cent each year, or about 17. The majority die not in surgery but in intensive care. It was the shortage of just one intensive care nurse that forced the hospital to defer surgery for Róisín Ruddle, the two-year-old Limerick girl who died after her scheduled operation was cancelled and she was sent home, only to die the following day. Her death was devastating for the cardiac team.
"Róisín was my patient. We felt crap, shattered. You tend to only remember the kids that die or the kids that have great complications. They stick in your mind forever," says Mr Wood.
While he says there is a consistent number of deferrals due to children having a high temperature or a cold which can treble the risk of surgery, the shortage of intensive care nurses has affected those figures in recent years. In 2003, 10 children had surgery deferred due to insufficient staff levels in the intensive care unit (ICU) out of a total of 42 deferrals. Last year, that figure had more than doubled to 25 out of 55 deferrals, says Mr Wood. Five children had surgery performed in Britain and 12 had operations in the US under the national treatment purchase fund.
There are 63 children on the waiting list for surgery and that waiting list could be wiped out easily if the ICU was fully staffed, he says.
Currently, the ICU is short of 33 nurses. Eight are undergoing adaptation and 22 are due to start work within a few months. The ICU's problem could be solved by paying such highly skilled nurses more because "they're not well recognised or well remunerated", he believes. "If we were a private company and you were short-skilled like this, you would pay them but this is a multi-layered bureaucracy."
Children's ICU nurses earn €40,000 a year at most, after studying and training for seven years - half of that earned by their counterparts in the US. But higher salaries are just one part of a multi-ingredient remedy. While the independent report into Róisín Ruddle's death criticised hospital management for not doing more to recruit intensive care nurses and highlighting the wage deficit, it also cited stress as being a major contributory factor in the staff shortage, a point reiterated by Orla O'Brien. "People think we don't have much staff but there are 100 nurses here. There are 5.5 nurses to each bed in the ICU. There is one nurse to each baby or child and sometimes, a difficult case will need two," says O'Brien. The constantly changing equipment and the intense, stressful nature of the job - "death is a fact of life in the ICU" - makes recruitment and retention of ICU nurses the biggest challenge, she adds.
Automatic residency would be a huge incentive for non-national nurses, says Geraldine Regan, head of nursing at the hospital. She hopes the proposal for direct entry into paediatric nursing instead of the four-year degree programme followed by 18 months paediatric training will be passed by Health Minister Mary Harney.
Despite these problems, for Mr Wood, the job is immensely rewarding. "The best part is seeing a kid come in to you who has had life-threatening congenital heart disease at two or three days of age and you've operated on them and they haven't a clue who you are and they're perfectly normal, healthy kids. That's a real buzz."
But while surgery and intervention has meant success, that success has a flip side in that it poses more problems for the future.
"The kids we're kind of saving now, in their 20s or 30s are going to need either repeat surgery or the skills of a heart failure cardiologist or they'll come onto the transplant list," says Mr Wood, who has carried out eight heart transplants on people with congenital heart disease. "That's the real difficult challenge for us in the next 10 years."
Of course, the other major challenge is an immediate one - the need for a modern hospital. It is an issue that has long been championed by parents and hospital staff. Dr Oslizlok believes children are not seen in the same light as adults by the State.
"They see a children's hospital as a sub-speciality hospital - that thinking should have gone out with the Ark. Children also have heart disease and kidney disease and brain disease. They just happen to be younger. Trying to get that message across to our political overseers is a challenge and behind that lies a lot of funding issues.
"Our greatest challenge is to be able to do our job without worrying about funding."