Patient Stories

ROSS’ STORY: Marfan Syndrome

Ross recovering in hospital after major heart surgery with Marfan Syndrome

"What a year"

“Take it from me – if you or your loved ones were to require surgery like the one I had, having The Baird Institute in your corner is something to be hugely thankful for.”

Having grown up with Marfan Syndrome, I became accustomed to knowing that one day I would likely need to undergo heart surgery. A common symptom of Marfan Syndrome is a dilating aorta which, if not diagnosed and treated, can prove fatal should a dissection happen. The comment from specialists about surgery was always one day, until October 2020 when Professor Richmond Jeremy, my specialist for the 8 years I have been in Australia, confirmed that it was time to go ahead with the surgery for the best chances of a positive outcome.

I was diagnosed with Marfan Syndrome at age 5, after my mother read an article that described the typical symptoms, recognized many in me, and decided to investigate. With that diagnosis came annual check-ups with ultrasounds and ECGs, wearing glasses and insoles, and becoming incredibly self-conscious throughout my childhood and adolescence with the physically apparent symptoms. It’s only as an adult that I can appreciate just how challenging and demanding all of that was from a parent’s perspective. Harder-still for my family, though, was being on the other side of the world back in England whilst I underwent valve-sparing aortic root replacement surgery here in Sydney.

Thankfully, I was in wonderful hands – hands that were backed by The Baird Institute!

It was only after researching my upcoming surgery that I learned about the work of The Baird Institute – the research, innovation and training that has saved countless lives, and was soon to save mine. I have since become a Partner in Research with a monthly donation to The Baird Institute in order to support their continued work and research.

At the age of 32 I was faced with undergoing major open-heart surgery – right at the start of a year when my fiancée and I were planning our wedding; the year that we had started planning a family; that my fiancée would turn 30; and only a year into a new role in my career. Life had to go on hold though, and I quickly found myself heading into the hospital, getting comfortable in the hospital bed, and heading to meet the anaesthetic team.

My first memory coming round from surgery was seeing my fiancée, Amy, and feeling absolutely, categorically fine (maybe thanks to the pain relief… okay, definitely thanks to the pain relief) – so fine that I thought I’d have been home the following day! I have a hazy memory of chatting to my mum on FaceTime, and the next couple of days soon brought on the aches and pains of surgery, the relief of pain management, a fever, and a couple of minor concerns come and go. I couldn’t finish typing text messages before I drifted off for an involuntary nap, and by day 3 I was moved out of ICU and onto Ward 6 East 2. I spent the next 4 days with the indescribably amazing team there, with a couple of visits from Professor Bannon and his team to check in and support with my recovery.

I was home on day 7 post surgery and had my own personal maid looking after me for the first few weeks (thanks to my then-fiancée, who I am now fortunate enough to call my wife)!

15 months on now, and what a road to recovery it’s been. Since surgery, I’ve felt fantastic for the most part. Recovery isn’t a simple or easy thing and was certainly a slower process than I anticipated. That said, in the time since Professor Bannon fixed what could have become a really serious problem with my heart, I married my beautiful wife on a yacht on Sydney Harbour; we held a 30th birthday party for her with all our closest family and friends (we love a party!); we brought home a third puppy, who’s now a 90kg monster; and most-recently we had the privilege of welcoming our first child, Ellie Kate, on 5th April 2022!

Take it from me – if you or your loved ones were to require surgery like the one I had, having The Baird Institute in your corner is something to be hugely thankful for.

I couldn’t be prouder to be a Partner in Research and I hope that you will take the opportunity to contribute to the life-saving work The Baird Institute undertakes, by donating to their Mid-Year Appeal 2022.

– Ross

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