JOSEPH Loughran was a tiny three pounds, three ounces when he was born six weeks prematurely on March 29.
Parents Sarah and Brian, recovering from the anxieties of a difficult premature delivery, were dealt another blow when doctors told them their newborn had a heart condition.
Joseph had a severe coarctation - a narrowing of the aorta, the vessel responsible for providing the body’s main blood supply. The blood flow from below the tiny baby’s heart was dangerously compromised.
Consultant paediatric cardiologist Dr Grant, at the Clark Clinic at the Royal Victoria Hospital for Sick Children, told the couple, who live in south Belfast, that prescribing Joseph medication would buy time for him to build up strength before surgery. Operating on a premature newborn is an extremely delicate procedure and ideally surgery would have been postponed until Joseph was stronger and better able to withstand the physical trauma of surgery.
But the baby failed to respond to medication and so a Professor Woods from Dublin had to travel to Belfast to operate on Joseph.
“The next 24 hours were horrific as we held our breath and hoped that our tiny son would be able to hold on to the Monday when he was to be taken to theatre,” says Sarah.
“The staff gave our son meticulous care and delicately dealt with us throughout that day as we waited to talk to the surgeon that night.
“There was no other option but to proceed as he wouldn’t survive without the operation and the journey to another unit in the UK would have added even greater risks. Joseph stopped breathing twice while waiting to go to theatre.
“So the timing, location and surgeons were critical to his survival.”
After four hours in theatre, Joseph made a successful recovery. He was discharged home after four more weeks in hospital. His heart is still being monitored but today he looks hale, hearty, happy.
But in future the same vital care Joseph received at the Royal Victoria Hospital may not be available in Northern Ireland.
Following a review by the UK Safe and Sustainability Team the Clark Clinic - which has been open for the past 40 years - is under threat of closure on the grounds that it is not sustainable. If it is closed extremely ill newborns like Joseph would have to travel to England or elsewhere on the mainland via emergency helicopter for heart surgery. This would naturally mean a delay in the time between diagnosis and treatment.
“It is unimaginable to think about what would have happened if the staff at the Clark Clinic hadn’t been there to treat Joseph. Joseph may not have survived a journey to England. And we, his parents, would have had to travel to the UK, putting immense strain in us at an already difficult time.
“The effect of such a relocation on the health of a child and their family is incalculable. We do not want paediatric cardiology to close in Northern Ireland.”
Sarah, who works as a GP, and her husband Brian, have thrown themselves into campaigning to safeguard the clinic’s future.
“A sustainable service, under the terms of this review, would have to see 140 operations performed at the Clark Clinic each year,” says Sarah.
“But the recommendations of the Safe and Sustainable Team are based on a demographic model for England, with a population
of 60 million, so this is not an appropriate way to assess the Clark Clinic, which provides world standard treatment to children
born with congenital heart disease here in Northern Ireland.
“The population here [compared to other parts of the UK] is smaller. It doesn’t mean, though, that the babies requiring surgery of this kind are in any less need.”
Year on year the frequency of surgeries will naturally vary: some years may see less than 140 surgeries, others may see a number exceeding this. So, logically, it seems wrong to dismiss the clinic as unsustainable because it does not match the surgery frequency of other parts of the UK which have bigger populations.
“Congenital heart defects are the most common form of congenital deformity,” adds Sarah.
“One in 200 babies are born with some kind of heart defect. A third of those will require surgery.
“If the service closes down then specialist heart doctors will not be retained at the Royal Victoria Hospital for Sick Children and I just think this is very short-sighted.”
In these times of economic difficulty the health minister is under pressure to make budget cuts, but Sarah and her family feel a vital children’s provision like this should not be the target of austerity measures.
It is a highly emotive issue: if the clinic is closed it could mean reduced chances of survival for ill newborns like Joseph.
“Devolution was supposed to see improved service provision here in Northern Ireland,” Sarah continues. “It is ironic that the service survived years of direct rule, but may be jeopardised by the actions of our own devolved government.”
The couple want other parents to be able to avail of the same life-saving service that their son received.
They want to see Stormont and Dail Eireann work towards a joint paediatric cardiac service - which would make for improved sustainability of the service, allowing it to meet the criteria of the UK Safe and Sustainable Team.
“Our family loves and cherishes Joseph, his life is precious beyond measure and we owe his life to the services of the doctors and staff of the Clark Clinic. We believe children’s lives will be lost if this service is removed.”
The consultation period on this issue closes on December 21 when Edwin Poots will have to make a decision on the clinic’s future.
“I would be devastated for other expectant mothers if the service is closed. I am lucky, Joseph survived thanks to the treatment he received, but if these services are available only outside Northern Ireland there will, in my opinion, be a greater risk to the lives of newborns with congenital heart defects.
“We are asking other parents to voice their support for the clinic’s continued opening while there is still time.”