Derry woman Dr. Sarah Murray and her husband Brian Loughran have thrown their weight behind a new campaign to keep paediatric cardiac surgery in Northern Ireland.
The couple, alongside Sarah’s parents Bridget and Roger Murray from Rushcroft Drive have expressed their fears over a review of services which could see parents being forced to travel to England for their children’s treatment in the future. Today in an open letter the couple explain how valuable the services were to them after their baby son Joseph was born six weeks early with a congenital heart condition. They say services in Belfast are vital and precious, adding that Joseph is now thriving and their story has a happy ending due solely to the services and staff working in paediatric cardiology based in the Clark Clinic at the Royal...
This is our son Joseph Loughran who was born on Thursday 29th March 2012 weighing 3lb 3oz and suffering from congenital heart disease.
We are writing to you to ask for your help and voice our concern over the recent report and recommendations made by the UK Safe and Sustainable Team following the review of paediatric cardiac surgery in the Royal Belfast Hospital for Sick Children.
Our story has a happy ending due solely to the services and staff working in paediatric cardiology based in Clark Clinic at the Royal. Baby Joseph was born unexpectedly and six weeks early under difficult circumstances, his mother had started bleeding heavily and the blood supply to him in the womb had ceased.
Following an emergency caesarean section Joseph was successfully resuscitated and transferred to the neo-natal unit.
The next morning he was diagnosed with congenital heart disease-we were understandably devastated as we had thought that he had come through the worst.
The doctors told us that Joseph had a severe coarctation (narrowing) of the aorta (this is the vessel which provides the body’s main blood supply). Due to this the blood supply from below Joseph’s heart was compromised and had stopped functioning.
Dr Grant, a Consultant Paediatric Cardiologist came to talk to us that Saturday and discussed the options.
They were all quite bleak and it was evident that Joseph would not survive without heart surgery.
The preferred option was to give medication which if it worked would buy us time so that Joseph could gain weight and the surgeons would then operate when he was bigger and better able to withstand such a major procedure.
A second option was to transfer Joseph to a unit in England with expertise in treating low birth weight babies with his condition for further management however this would require time to organise and depend on Joseph responding to the same medication to keep his circulation going in the interim.
Joseph was given medication but unfortunately throughout the day he didn’t respond and we watched helplessly as his condition deteriorated further-neither of the above options were now viable.
Dr Grant came back to us that evening and told us that he needed surgery urgently and Professor Woods from Dublin had agreed to take on his case and operate on him that Monday assisted by Mr Austin.
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.
During that Sunday the support which we had from our parents, siblings and friends was tremendous as they tried to provide us with strength and reassurance.
Our local parish priest also visited and baptised Joseph in the intensive care unit.
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.
All of this would have been much different if we had been transferred to another unit in England.
The surgeon who consented Joseph for surgery was patient and professional as he took us through the risks of the procedure.
At this stage it was now estimated that he weighed 2lb 7oz but there was no other option but to proceed as he wouldn’t survive without the operation and surviving the journey to another unit in the UK would have added even greater risks.
Joseph had his coarctation repair on the Monday at 1pm- that morning he suffered a respiratory arrest (stopped breathing) twice whilst waiting to go to theatre.
The timing, location and surgeons were critical to his survival and thankfully our baby made a successful recovery and was discharged home after a further four weeks in hospital.
The cardiology service is still looking after Joseph and he is carefully monitored through heart scans and review appointments with Dr Grant every eight weeks.
We hope as he gets bigger and stronger that the period of time between his reviews will be extended.
The day after Joseph was born on March 30th this year the Minister for Health Edwin Poots announced a review of the provision of paediatric cardiac surgery by the UK Safe and Sustainable Team. Consultants at the Royal Victoria
Hospital for Sick Children’s Clark Clinic were given just ten working days to prepare their responses and parents were given one hour with the panel.
This compares with periods of up to three months for other cardiac departments when similar reviews were undertaken in England and Scotland.
As a family we are extremely concerned as the recommendations from this report state that the Clark Clinic or paediatric cardiac service in Northern Ireland is safe but not sustainable and indicated that it should be closed.
We are hoping through this letter and Joseph’s story that you can see how vital and precious this service has been and still is to our family.
It is unimaginable to think what would have happened if Dr Grant, Professor Woods, Mr Austin and the other staff of Clark Clinic hadn’t been there to diagnose, treat and follow up Joseph.
Firstly, Joseph may not have survived the journey. Secondly, we, his parents would have had to travel to the mainland UK putting immense strain on us at an already difficult time (indeed his mother would not have been able to travel initially due to her recent surgery).
Our wider support network would have been lost and practicalities such as arranging accommodation and finances to support us whilst away would have added to our worries.
The effect of such a relocation on the health of a child and his or her family is incalculable.
We do not want paediatric cardiology to close in Northern Ireland.
The recommendations of the Safe and Sustainable Team are based on a demographic model for England, with a population of 60 million.
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.
It also states that no child should have to travel more than three hours by reliable transport to receive specialised cardiac care.
However, in the case of Northern Ireland this is contradicted because if the Clark Clinic closes the nearest unit in the NHS would be in the mainland UK which is well over three hours away in travel time.
We have many concerns about the effect of such a closure on Northern Irish children with congenital heart disease and their families.
We also are concerned about the impact on the training and future careers of paediatric cardiologists and surgeons.
If this service goes then so will our wonderful expertise. Who will diagnose and manage current and future children with this condition in the province?
Devolution was supposed to see improved service provision here in Northern Ireland, it is ironic that the service survived years of direct rule, but may be jeopardised by the actions of our ‘own’ devolved government.
We are hoping that you can help canvass the Minister for Health directly to help voice our opposition to this report and we also hope that you will agree with our views.
We, like many families, are acutely aware of tightening budgets at home, work and in health care.
However, we do not feel that a children’s provision should be targeted.
There are an average of 120 surgeries performed here annually - any closure would be short sighted and adversely impact the future of our young.
There are solutions which are currently being considered, which include a cross border paediatric cardiac service with Our Lady’s Hospital in Crumlin.
We feel that this is the best way to ensure that the Clark Clinic becomes more sustainable and would protect our future and enhance our current service.
The Minister of Health Edwin Poots has opened up a consultation to look into this option following pressure from the public.
We hope that you can help to keep up this pressure up so that Stormont and Dail Eireann can work towards a joint paediatric cardiac service for the children and future children of this island.
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 Clark Clinic.
They managed his case in a very dignified, professional and compassionate way and we now want to play our part in trying to help them safeguard the lives of future children.
We ultimately believe children’s lives will be lost if this service is removed.
Brian, Sarah and Joseph