STATEMENT FROM THE RUDDLE FAMILY: Following the publication of the reports' into the circumstances surrounding the death of our daughter, Róisín, we wish to make the following statement:
In the immediate aftermath of the death of our child in the early hours of July 1st 2003, there was a great anger. Just 24 hours earlier, at Our Lady's Hospital for Sick Children, Crumlin, as she was being prepared for surgery later that morning, we prayed for the success of her operation and her subsequent recovery.
At 11 o'clock in the morning, after a sleepless night, we were informed that the operation, which was to progress Róisín's treatment, had to be abandoned due to the non-availability of an intensive-care bed. Only the parents of heart children can ever know the anguish, the mixed, confused even, emotion of a time like this. Is there any parent who would argue for, or countenance, the early evacuation of one sick child from an ICU bed in favour of their own child? We were made aware of the true facts when it appeared in the media a day or so later.
There was no consolation, only aggravated grief, when, a few hours after Róisín's death, we were contacted by the hospital authorities to express their regret at her death and to further state 'that her operation had been rescheduled for the following week'. There was the pain of being informed by a 'parents' support group' that contracts had been signed and much improvement envisaged as a consequence of what had happened. Well-intentioned as it may be - our little girl was not yet in her grave.
Notwithstanding the fact that Róisín had died suddenly and, in the most bizarre circumstances, the fact that she had been turned away without her operation left us with many unanswered questions surrounding her death.
There were other questions that we felt needed to be asked in the interests of 'heart children' and their parents. High among these was a statement contained in a report issued by Our Lady's Hospital for Sick Children to the Eastern Regional Health Authority regarding intensive-care nurses. We received a copy of this about the same time. It is not included in the terms of this inquiry for investigation by the 'Inquiry Panel'. It states: 'In recent months the hospital has approached a number of agencies to assist in this matter and it has been established that some nurses are available if funding is made available.'
Could it be possible that we lost our child for lack of funding? What had happened to us that things should go so badly wrong? We resolved to seek an independent inquiry.
Following the announcement of the setting up of the panel of inquiry by the minister for health and children, Micheál Martin, and in the week scheduled for its commencement, we were astounded to find the publication of our child's complete record of attendance to Our Lady's Hospital for Sick Children, together with some internal correspondence concerning representations made by the minister to the hospital (in another child's case), in a Sunday paper (31-08-03) as most insensitive and a gross invasion of our privacy, as we see no possible justification for releasing it, or publishing it, at this most difficult time for us, our extended families and friends.
Due to the complexities involved in the workings of the hospital - medical, nursing, managerial etc - some of the questions, as dictated by us, had to be rearranged to take account of this. We are assured by the panel that the thrust of our inquiry, as understood by them, has been fully explored, and while the detail of all of our questions does not appear in the report, we accept the assurance of the panel that they have been dealt with as we would have wished. This does not mean, however, that we accept all the answers or conclusions reached in reply to them.
In order that our position in calling for an inquiry be more fully understood, we believe it is necessary to go back to the beginning and the day of Róisín's birth, when [ at] only a few hours old it was discovered that she was in need of intervention for a suspected heart defect.
Róisín was five days old before a slot could be found for her emergency operation - even then her breakfast had to be retrieved to allow the operation to proceed. These first five days turned out to be a 'crash course' on what it is to be the parents of a 'heart baby', and with it the realisation that from here on our child would be in the care and expertise of the medical profession, specifically at Our Lady's Hospital for Sick Children, Crumlin.
The questions and observations we have made to the inquiry panel that we felt they should raise with the relevant hospital personnel can be found in the report.
Arising from these questions, and with further inquiries made by the panel on their own behalf, findings and recommendations have been arrived at for implementation by the hospital authorities.
Despite this, however, there are still areas of concern to us, as parents of Róisín, and it is our wish to set the record straight. Furthermore, we suspect that there remain areas of concern and anxiety that might need to be addressed in the cause of heart children and their parents.
To best explain this, perhaps we should relate our own experience as it affected us, and our child.
Concern was expressed by Dr Adrian Moran, cardiologist, regarding Róisín's oxygen saturation levels in October of 2002. Following on from this, it was decided by her medical team that it was time to map out the course of her treatment, that would carry her into adulthood.
By December, however, we became aware of a worsening of Róisín's condition.
This manifested itself in a heightened blue complexion, a shortness of breath, and worse, from our point of view, she became unsteady on her feet. A blood test at this time did not unduly alarm her medical team. We are told that, because of the complexity of her case, it was not until March, when she had a catheterisation procedure followed by a medical conference, that it was finally decided that intervention in her case should proceed with a 'Glenn shunt'.
We met Mr Wood, consultant cardiothoracic surgeon, on Thursday March 27th 2003 at his private rooms to discuss this and to be told what was involved in the procedure that Róisín was about to undergo. It was conveyed to us that this was but another step in the treatment now decided on, and was the safest way to proceed in her case. It was explained to us that the path set out for Róisín, namely Glenn shunt, followed by a Fontan, would carry her 20 to 30 years without further intervention, and even then the prognosis for her was very good, as 20 to 30 years in medicine is a very long time.
It is important to state that we accepted this direction completely and have been given no reason to change our minds about it subsequently.
We met Mr Wood in the expectation that we would be given a date for the operation to progress Róisín's treatment, only to be told by him to contact his secretary in three weeks, when we would get a preliminary date."
The Ruddles contacted Mr Wood's office on April 17th and April 22nd 2003, and requested a preliminary date for Roisin's operation. They were told that Róisín was not on the list for operations for the month of May and to ring again next month.Roisin's parents rang again on May 22nd, to be told that she was not on the list for June, but should there be a cancellation/s, she might be called, giving one week's notice.
"By the middle of June we had no contact from the hospital and were watching our child struggling with her condition. And, with no medical experience, how do we know she's going to be all right? It had been three months and our efforts to get a date for her surgery were all to no avail - and worse, should another month go by, Mr Wood would be on holiday.
We rang again on June 18th and this time we were told she was booked for June 30th. We were also informed at this time that we would have to travel to the hospital for preoperative tests on Wednesday June 25th.
These dateswould be confirmed for us by 3 p.m. on Monday June 23rd. When, by 3 p.m. on Monday June 23rd, there was no confirmation of the dates in question, we decided to ring and find out what had gone wrong. It was confirmed for us then that, yes, she was booked in, and we should travel for the dates stated earlier.
It will be seen from the sequence of events recorded above that it was between March 27th, when we met Mr Wood, and June 18th before we could determine a date for Róisín's surgery. It might be noted also that at no time throughout this period was contact initiated by the hospital.
This was a time of great anxiety and concern for us, the parents of an ailing little girl, while we struggled to get a positive response for a date for her surgery that, by now, we were keenly aware was a vital link in the progression of her treatment.
And while we have been given reasons why this situation exists, we are not at all convinced by them.
It is our opinion that the waiting list must be a factor in this, our reasoning being - a long waiting list, the possibility of more emergencies, and, with more emergencies, more cancellations, and this is to say the least of it.
Is it not possible to give a reasonable timescale, a window, for the parents of heart children to be told when their loved ones will get that vital surgery that is so necessary for their wellbeing, and in so doing remove much of the uncertainty and anxiety that surrounds this issue?
It will be seen from the report that we made reference to the travel and long journeys, over a period of five days, and in hindsight the possibility of it being a factor in Róisín's death.
There are aspects of the hospital authority's observations in this matter that we feel we have to take issue with in the interests of what is factual, and with the possibility that it may resurface, should nothing be done about it.
It is our contention that the four car journeys, undertaken by Róisín and us, her parents, over a period of five days from the 25th to the 30th of June, in the prevailing conditions and circumstances, has no parallel anywhere.
This was a little girl who suffered from a rare and complex heart complaint. She was strapped in a seat for four hours on the journey to Dublin on June 25th. On the return journey, on June 26th, we are caught up in a (concert) traffic jam that took five hours to complete.
We set out for Dublin again on Sunday June 29th, when at midnight she was prepared for her operation, fasting and with a drip in place all night. At 11 in the morning, with the cancellation of her operation, she was literally taken from her bed and, although offered food by us from the hospital coffee dock, which she refused, we set out once more for home.
Compare the car journeys we have outlined above with a plane journey to the UK that might take an hour and a half to complete. On a plane, you have the opportunity to get up and walk about. It is hardly credible.
There was no comparable set of circumstances in Róisín's short life that would have made it necessary for us to undertake the journeys as outlined above.
We can categorically state that this did not happen previously, as stated by the relevant medical staff (see report 5.15).
We know that there are recommendations, by the panel, concerning this, and we welcome them wholeheartedly, as we do all the recommendations in the report.
We are firmly of the opinion, however, that the trauma and stress generated over the preoperative period of the night before, and where there was an unavoidable cancellation, that children of this category - heart children, elective or otherwise - should be medically checked and monitored for a time before being discharged. Ideally, of course, they should not be going home at all.
Returning home with our wonderful little girl, Róisín, from Our Lady's Hospital for Sick Children, Crumlin, without having had her corrective surgery, with months of anxious waiting behind us and with her sudden death only hours after returning home will forever haunt us.
We started out with trust and confidence in our health system: our medical people are among the best in the world - it was you who told us: 'She might not be a footballer, but may well be a computer expert.' Róisín was a bright, sociable, and a loving child, as all who knew her will testify.
For 18 months she was like all little girls of her age, taking part in the hurly-burly of a young life, and thereafter the obvious difficulties of her condition, showing the need for medical intervention.
We have no doubt at all but, had Róisín been given the chance for life on the morning of June 30th 2003, she would be still with us - a chance denied her and, as a consequence, a damnation on us, her parents, who put our misplaced trust on the health system that is ours.
We are told that, in the absence of any other obvious cause of death, it was presumed that Róisín died of cardiac arrhythmia, a condition, or whatever is the correct term to describe it, we have to confess that we had never heard of until after her death.
It might be deduced from the report that this may be more prevalent in heart children.
In the interests of the parents of heart children who may be unduly worried on reading this, we have, during the course of the investigation, sought statistics on this. We have been given to understand that there are no actual statistics and that the incidence of it occurring in heart children is, in fact, quite low.
It will be a source of some consolation to us that, as a result of our call for an independent inquiry into the circumstances surrounding Róisín's death, and having in mind the recommendations and observations made by the inquiry panel, it is our fervent hope that it will bring about safer and better conditions for heart children and their parents.
In writing this statement we are conscious of, and acknowledge, the profound sense of gratitude felt by so many parents to Our Lady's Hospital for Sick Children, who have exercised great skill and expertise to help bring normality to their children. Our only regret is that we cannot be counted among them.
To all who shared the pain with us, your love and compassion has been our strength.
To parents everywhere who have lost loved ones, we are in solidarity with you and share your grief, as only we who have had this experience can ever know.
To those who gave us space to grieve, we gratefully appreciate it, and thank you most sincerely."
Gerard Ruddle and Helen Quain-Ruddle, the proud parents of Róisín Ruddle