The following transcript is that of Mary Morrogh’s speech at the 23 September launch of the Acquired Brain Injury Ireland’s 2015 campaign. We invite you to read and join the cause.

Four and a half years ago, on the Sunday of the May bank holiday weekend, I spent the afternoon with my eldest brother Dominic and my young Son, Marcus.  Dominic had called over so that he could have some ‘baby’ time. His Daughter, also nine months, was in India with Tara, Dominic’s beloved wife. She had brought her daughter home to meet her family. Such a special time. Despite missing them, he was happy. Especially because that morning he booked flights to join them later on that week. He just wanted to be with them. I can hear his voice and laughter so vividly in my head. He was so happy and complete since Sonja was born. I didn’t know at the time how special that day was for me.

The next day was a gloriously sunny bank holiday Monday. One of those days that the sunshine called you outside. My husband and I and our little boy headed off for a walk. Bray to greystones. I am sure many of you know it. Dominic was also beckoned outdoors. He put on his wetsuit, packed up his kitesurfing Kit and with William, another brother(!), headed for the beach. I have no doubt that thousands of people around the country did the same thing that morning. They stepped outside. I’m sure if you think back, you did too.

However, what happened next did not happen to thousands of people. Like a lottery, it could have been you, but it wasn’t. It was Dominic. It was us.

Shortly after noon, I got a phone call from Nicky, yet another brother, to tell me that Dom was in an accident and he had been phoned by a nurse in Beaumont Hospital. He had no other information. My husband and I turned the car around, left our little son with a neighbour and headed to Beaumont as quickly as possible. I made a call to a doctor-friend, Will Robb, who worked there. That’s what you have to do, as a sister-doctor.

I had worked in Beaumont hospital, I knew it well, but this time I walked into the Trauma Bay as a sister, not as a doctor.

I saw my brother Dominic, unconscious, still in his wetsuit, covered in sand. By his side were my other brothers, Nicky and William and youngest sister Anna. I saw the look on the faces of the staff. I saw that they avoided my gaze. The doctor in me, told the sister in me, that this was it. My big brother, our cornerstone, was badly hurt. My family, everyone I love, was about to crumble and fall apart. They just didn’t quite know it.

More phone calls followed.  To Cork, to my parents and family friends who could accompany them on the lonely road to Dublin. To India, to Tara. The first thing she asked me was if he was alive. That was all she wanted to know.  She then packed up her things, picked up her infant daughter, stood between her parents, her pillars of strength and got on a plane. I waited for her on the other side. Dublin airport will never be the same.

A sunny day, a gust of wind, an accident.  No fatality, but now a life worse than death. A family broken, not yet realising the enormity of it all. In a moment everything changed.

Last year 197 people were killed on our Irish roads. This statistic is easy to find and often referenced. But what about the people who had accidents and did not die, what about the lives that are saved in the acute setting?

ABI estimate that each year over 13,600 irish people in acquire a brain injury.  My brother, your sister, your partner, parent, child or friend. We all have been touched. Where, where are those people? How are they? Are they alive? how do they live? How are their families?  The system has no record. The system cannot answer those questions.

I can answer those questions about Dominic. Dominic is alive. Not the Dominic we knew, he has gone, the wind blew him away, but the Dominic of today and tomorrow.

Dominic spent his first year in Beaumont Hospital. For the first six weeks or so as an actively managed patient, and for the remaining 46 weeks as a patient “awaiting rehab”.  After a year, he was transferred to the NRH for his pre-allocated 12 weeks, for assessment and rehabilitation under the good care of Professor Delargy and his team. That was all the system would allow him, 12 weeks. Soon after arrival and upon completion of his initial assessment, he was classified as being of poor-rehab-potential and the focus of his treatment became ‘comfort-care’ and ‘long-term’ planning. In other words, the system decided that he was to be moved on, away from rehabilitation and into comfort care only. Palliation.

And so, 15 months after heading out to enjoy a morning of kitesurfing, the system had decided that he had no meaningful future. This 36 year old husband, father, brother, son, friend and professional man was unlikely to improve. Therefore his family needed to find a place for him to go to and wait for nature to take its course. Let time pass.

Diagnosis made, prognosis decided, case report complete, file closed, chart sent to storage. He was now a burden to the system and he had to move on, had to move out. This was now our problem. There was no system in place to help.

It was then up to us as his family to find somewhere that would ‘take him’. His family who were grieving and struggling to maintain normality in our lives. Tara, desperately trying to manage her own grief as a wife, was a professional and mother, the most important job of all. She was now expected by the system to become a carer, a nurse, a doctor, a therapist, a physio, his own MDT. With no training, no experience and not even in her home country.  I, while heavily pregnant, working a full time job, being a mother to a young son and having a husband working in another part of the country, I tried to be Dominic’s Doctor. Like a ward round, I went to him each day, spent my spare time researching medical advances and therapies that were outside the confines, beyond the limits of the system he was in. We also began to contact nursing homes as potential places for Dom to go to.  Every manager I called was sympathetic, but there was no room at the inn. No place was capable or set up to care for him. My parents were thrown into a deep sea of grief and became carers for their adult son, denied their Golden Years.  My brothers struggled to maintain the business that they built with Dominic, so that they could provide for Tara, Sonja and Dominic, we well as themselves and children.  My sister tried to cope on her own and support us despite being miles away in another country. All his friends hurt too. So many people were affected.

Then we got lucky. After 15 months of darkness, there was some light. Dr Cogan and her team in the Royal Hospital Donnybrook offered him a bed, albeit temporarily, albeit just as a resident. We got a chance to breathe, a little. Dominic was no longer homeless. Since Dominic moved to Royal Hospital Donnybrook, he has remained well. Despite spending the last three years lying in a nursing home bed, he is extremely strong and healthy. He has had wonderful comfort care, but little else. In August 2011 the system decided that he had no meaningful potential for rehabilitation, that any efforts would be in vain. False hope. Despite the willingness, skill and expertise of the staff at Royal Hospital Donnybrook, the system did not allow them work outside the box. He is there as a temporary resident, not a rehabilitation patient, there are no guarantees. His place is not permanent. We would be devastated, again, if he had to leave. This could happen at anytime, today, tomorrow, the next day…. Tara could just get that letter in the post.

No rehabilitation because that is what the system had written in his discharge papers when they last saw him in August 2011.  No hope for improvement, just palliation. But we all know that there is almost no medical condition that remains static. Not asthma, not diabetes, not hypertension, not cancer, not eczema, not arthritis, not MS. Not one. Certainly not Brain Injury. We have all heard Brian’s Brian’s story. Overtime, Dominic’s condition is changing. He is there. We believe he is improving, that he is fighting to emerge, to connect and communicate. Dare we imagine where he could be if had was given the basic right of rehabilitation over four years ago?

It is of great importance to my family that I highlight that the staff in the Royal Hospital Donnybrook who care for Dominic 24 hours a day, 7 days week, are wonderful. They provide an environment and a community that is warm and welcoming, and allow for his team of friends, family and carers to be with him and look after him. Its location is paramount to our ability to care for him.  He can remain within his community and we can live around him, with him, and include him in our everyday lives. The staff, despite not formally supported to manage this cohort of patients, have exhibited incredible effort, empathy and care, kindness and support and have developed expertise and skill beyond what is expected of them in their role. They have come to know Dominic and care for him, and ensure that he is cared for to the best of their ability, within the constraints of the system. They offer our family a place to be with respect and dignity, hope and positivity. They are not supported or facilitated by the system to offer him any rehabilitation. Yet, each day, the therapists there fight for him, recognise that his status is dynamic and try to help. The system allocates 20 of a potential 10,080 minutes in his week to physiotherapy. The therapists push their boundaries and give us any extra moment of time that they can to make a difference for him, but their hands are tied. We try to compliment this in any way that we can to bring in help such as physiotherapists, or funding from the outside, but again, the system limits us in our efforts. The “regulations” say no. The computer says no.

There are so many Nos.

Dominic has no system. Dominic has no choice.  If Dominic had a choice in any of this, he would have almost certainly chosen death. For his current life is torture and pain, not just for him but for everyone that he loves and that loves him. His wife, his daughter, his parents, his siblings, his dear friends. So many people have been effected. If he had a voice, he would tell us he was sorry, he would tell us that he loved us and he would ask for help.  All those nos, but there is also yeses. Yes he is Alive, yes he has a present, yes he has a future, and yes he has rights. Just like you and the person standing beside you. He has a right to be cared for in the best possible way. A right for to be treated with respect and hope, to be considered and not ignored.

We are not the first family on this journey, and we will not be the last. Accidents will always happen. Every day. As medicine advances, lives will be saved where before they may not have been possible. Whilst this does raise huge ethical questions, the fact remains that these people are alive. They cannot be ignored, they cannot be saved and then forgotten. They have a present and a future whether the system likes it or not.

There will be more patients like Dominic. More families on this journey. More sisters like me. I wish that that were not true, but it is. And if it is you next, we will be there to help you. I will be there. Because no one should do it alone.  We desperately need the a system to be created to support our health care providers and allow them deliver and develop their expertise in a meaningful way, and care for their patients, our loved ones in a way that they are trained and motivated to do.  They need to be facilitated.

On the second of May 2011, we lost the Dominic we knew, and joined him on this journey. On this rollercoaster. It sucks. It is never ending. But we have to just roll with it and continue to fight for some sort of quality of life for him, for peace, comfort, dignity and respect.  While we must remember him as he was, as well as consider him as he is, we need to move forward with our own lives. Always beside and behind him, and try to lead with hope and find some light.

Finally, I want to take this opportunity to thank everyone who has helped my family and I on this journey. Helped by caring for us, and thus allowing us care for him, and together build a team and create the DominicMorroghTrust. This framework provides us with the means and the strength to keep going, to move forward and to make sense of this journey. But we, the DominicMorroghTrust cannot do this alone. Nor can ABI Ireland. Nor can the Royal Hospital Donnybrook. Nor can Professor Delargy and his colleagues at the NRH. Individuals in the health care system that have the compassion, skill and expertise to make a difference cannot do this alone. It takes a team with a game plan, a strategy to win. That strategy has been already been commissioned, written and put in print over four years ago. But the Government put it on a shelf. We need support in this fight.  We need to get the system to open that report, read it and implement it. Actions speak louder than words. The government must invest in quality services and leadership; must not ignore but recognise, facilitate and support. The government needs to do this, not just for Dominic, not just for Brian, but for every person with an acquired brain injury and their families, wherever they are.

We urge those with a voice to speak for those with none, and push for change. Please get involved, sign our petition, and help those that cannot help themselves. Your family could be next.

Posted by admin@dominicmorroghtrust.ie on Friday, September 25th, 2015 @ 12:45PM
Categories: General, News