Barry Willis was my dearly loved and loving husband, and a wonderful father, grandfather and loyal friend who worked as a research and development chemist, displaying the most amazing engineering and handyman skills. He was a tall, slim, active, fit, healthy living, caring, considerate, kind, patient, thoughtful and witty man, who greatly enjoyed life and all that it had to offer. He suffered from migraines for over thirty years for which he took preventative medication, and in 2007 was diagnosed with peripheral neuropathy, with no cause determined after exhaustive testing. Following a CT scan in 2012, Barry had been told that he had a “tortuous” aorta, but there was no indication that this was a concern.
It was therefore a great shock when on 30th March 2015, Barry, then aged 65 years, complained of sudden, ripping chest pain and dizziness and was taken to Concord General Repatriation Hospital. A heart attack was ruled out within hours. A member of the medical team “inexplicably cancelled” a CT scan planned for Tuesday 31st, leaving Barry to continue suffering relentless pain for close to 75 hours, until he finally underwent two CT scans five hours apart on Thursday 2nd April which diagnosed his condition as being not only a B dissection in his descending aorta, but also an Acute Type A aortic dissection. He was then rushed to Royal Prince Alfred Hospital (RPAH) for emergency surgery where he was met by one of the specialist Baird Institute surgeons who informed him that he would die unless he underwent surgery.
The following morning, Good Friday, 3rd April, following the operation which involved heart valve replacement and dacron grafting of Barry’s ascending aorta, the surgical team met with me and our children and informed us that in addition to Barry’s operation being a very long and difficult one, they believed that he had a genetic connective tissue disorder, Familial Thoracic Aortic Aneurysm and Dissection (Familial TAAD). It was recommended that Barry’s siblings and all children have their aortas checked. Both of Barry’s brothers were subsequently found to have aneurysms measuring up to 5 cms in their ascending aortas and their health continues to be monitored. The surgeons further explained it was “touch and go” as to whether Barry would survive and the next 24 hours would be crucial. Barry’s operation was complicated by bleeding and the surgeons had opted to delay chest closure until the bleeding was controlled. Over the next two days, Barry was in an induced coma, while our family waited to see if he would survive. The bleeding slowed during this period, and on Sunday 5th April, Barry was returned to theatre for the chest closure procedure. After the surgery, Barry gradually regained consciousness and commenced his long road to recovery. After leaving RPAH in mid-April, he spent nine days in Royal Rehabilitation Hospital at Ryde before finally coming home 27 days after his dissection. We called him “Miracle Man”. He felt so lucky to be alive and he considered every day to be a gift. He very persistently and determinedly worked hard to regain his health and strength.
Over the next two years, Barry was closely monitored by his surgeons and his cardiologist, Professor Richmond Jeremy. Regular CT scans to monitor aortic dilation were always a major source of anxiety since we had been told that it was very likely that Barry would require further repair surgery in the future, as the surgeons had done the best they could in the aortic repair surgery under very difficult circumstances, especially in view of the four day delay in diagnosis. Barry also had a number of other health issues, necessitating regular visits to the GP and other specialists.
As Barry’s wife and carer, I took over the lawn mowing, gardening and lifting tasks, and did all I that I could to look after him in order to keep him alive. For the first year after his dissection, I continually felt we were living with a ticking time bomb. It was always in the back of our minds, which made it hard to relax and enjoy life.
We gradually resumed our former activities and interests, with Barry back researching and doing his much-loved handyman tasks, and me teaching and volunteering in the community. We also resumed our weekly 25 km bike rides and we walked daily. We enjoyed some short holidays and day outings, although long distance and overseas travel was now totally out of the question. We also had many opportunities to enjoy time with our children, grandchildren, extended family and friends, time together which we always treasured.
Unfortunately, a CT scan conducted in March 2017 revealed that Barry’s aorta was measuring 6.0 cms in parts, and following consultation with Professor Jeremy and the Baird specialist surgeons, Barry was strongly advised to undergo further major repair surgery involving the replacement of his aortic arch and the insertion of a frozen elephant trunk prosthesis, as he was now at great risk of rupture and certain death.
Not looking forward to it but having researched in depth the procedure which we were informed had an 85 – 90% chance of success, Barry was admitted, ever hopeful, to RPAH on 8th August. On Wednesday 9th, he underwent a 12-hour long operation performed by the specialist Baird Institute surgical team, which he miraculously survived. Unfortunately, Barry had to be returned to theatre early the next morning for chest re-opening due to bleeding complications. He remained in an induced coma for another nine days due to problems controlling the bleeding, chest reclosure, clots and infections. In addition, we were told that he had suffered a small sub-arachnoid brain haemorrhage. On the 20th of August, following the tracheostomy operation, Barry regained consciousness and for the next 19 days, he courageously fought further complications and eventually weaned himself off the ventilator. It was a very traumatic, challenging and worrying time for us all.
Sadly, there were to be no more miracles.
On Friday evening 8th September 2017, Barry’s 32nd day in Cardiac Intensive Care, shortly after I had said good night and told him that I loved him, he suffered a catastrophic subdural brain haemorrhage, thought to be caused by a clot in his venous sinuses pressing on his brain. Barry had completed an Advanced Health Care Plan, also indicating his wishes as a registered organ donor. Barry spent two days on a breathing machine, and following declaration of brain death, one of his kidneys was retrieved and later transplanted into a recipient who had been on dialysis for two years. It is a small comfort to our family to know that Barry lives on in someone else, as well as in our hearts and memories.
Following his dissection, Barry and I became donors to The Baird Institute, as we and our family were so grateful to Professor Jeremy and the specialist Baird Institute surgeons for their caring monitoring, skills and knowledge to prolong his life, which enabled me and our family to have Barry in our lives for another 29 months after his dissection.
I miss Barry every day, and since his death, I have done my utmost to raise awareness in the community of the symptoms of aortic dissection and the importance of early diagnosis and intervention. In addition, I have continued to financially support The Baird Institute and its wonderful work in research, development and training (causes very close to Barry’s heart – pardon the pun) as a Partner in Research, making donations to their appeals and including provision of a bequest to the Institute in my will.
I feel immensely excited and hopeful about the current research being undertaken by The Baird Institute, as I consider it has the potential to save many more lives, thus allowing families more precious time with their loved ones.