The aorta is the largest artery in the body that carries oxygenated blood from the heart around the circulatory system. People with Marfan’s disease usually develop a dilated aortic root, where the vessel wall thins, expands and eventually ruptures. If the aorta does rupture, unless treated immediately, it is fatal.
One man who has Marfan’s is a chartered engineer from Gloucestershire, Tal Golesworthy. He was aware that the traditional operation, the Bentall graft, was incredibly dangerous and invasive, involving a heart and lung bypass and a need to cool the body to 18°C. The whole operation can take up to six hours by the end of which the dilated root of the aorta has been removed and replaced with a composite graft. If the operation is a success it is then necessary for the patient to take anti-coagulation therapy for the rest of his/her life in order to stop blood clots in the aorta. Golesworthy’s main concern was less the risky operation but more the dangers of the anti-coagulation medicine which can cause bleeding and generally shortens one’s life-expectancy.
Nothing frightens me any more, I feel able to express myself without let or hindrance and I can live as I will
Golesworthy put on his engineering hat and decided to think of a new, improved way of curing this life-threatening problem. When a high-pressure hosepipe has a bulge in it, he thought, all one needs do is wrap tape around the problem area and it will keep in place. With this in mind, Golesworthy wondered whether his dilated aorta, which, after all, is simply a pipe that is bulging and losing strength, could be treated in the same way. This led to his creation of the external aortic root support, aka EARS, which would fit around the dilated aorta root and stop it from rupturing. Though the concept was easy, making it a reality was more difficult.
Golesworthy writes, “To build technical and commercial teams, raise the finance, run the project and volunteer to be the first patient was not so easy, particularly as I was trying to operate as a rational project manager when I knew the outcome of the project could have such a profound impact on my future health. I was, and probably had to be, obsessive about the project and had to fight on any number of fronts to drive it along fast enough to benefit from it personally.”
His aorta was already so dilated that he needed to act fast before the traditional procedure became all but essential. Using MRI (Magnetic Resonance Imaging) the exact size and shape of his aortic valve was discerned and a model created through rapid prototyping using CAD (Computer Aided Design). From this bespoke model of his aortic root, a porous mesh support was made that was eventually placed around his aorta.
The surgery to put the EARS in place is a much less invasive operation than the Bentall graft and doesn’t require a heart and lung bypass or cooling of the body. Most importantly for Golesworthy however, was that no anti-coagulant treatment was or will be necessary post-surgery. The operation, which only takes two hours, involves the surgeon placing the aortic support around the aorta and sewing it up on one side.
To build technical and commercial teams, raise the finance, run the project and volunteer to be the first patient was not so easy
Since having the operation back in 2004, Golesworthy has had no complications. Today, he is busy trying to get EARS recognised internationally as a safer more effective way of curing a dilated aorta.
He writes, “I am living a life so “normal” that all the usual banalities have crowded in to irritate: work, money, the health of other family members, etc, but I have a freedom and emancipation that only an experience as profound as cardiothoracic surgery (or similar) can bring. Nothing frightens me any more, I feel able to express myself without let or hindrance and I can live as I will. That does not mean that I do not give due consideration to others: by and large, I do…”