Major General Sir Sebastian Roberts OBE
“Within days I was given a new valve, and a few years later, a new aortic arch: in effect, a new lifespan, all owed to the professionalism, care and humanity of the people of St George’s, and the wider NHS.”
Sir Sebastian Roberts is a retired senior British Army officer. Although originally diagnosed with Marfan Syndrome when he was nine, Sebastian was first referred to St George’s in the early 1990s with his son and daughter. In 2001 a scan identified a serious aneurysm and he was again referred to St George’s, this time surgery to replace a valve. A few years later he underwent further surgery to replace the aortic arch.
“When I was about 9 years old, my parents became concerned about my “bumpy” chest. Our family doctor referred me to Great Ormond Street, so a few weeks later I found myself standing in my baggy underpants in front of a full lecture theatre of young doctors, still bemused at having been ushered behind a curtain and told by a nurse to “make water” into a paper cup. Never having heard the term before, I peed AND spat in it for good measure. In the lecture theatre I first heard another term: Marfan Syndrome.
The senior doctor who used it said that they could operate to reshape my rib cage, but that it might be better to wait until my bones had set; until then he recommended physiotherapy, to strengthen my torso. For the next few years, until going to boarding school at the age of 13, I had weekly sessions with Miss Davis, a tiny ball of energy and strength, who had studied yoga in northern India, decades before it was made fashionable by rock stars. She taught me to breath, to walk, to relax: a wonderful preparation for the rest of my life.
The next time Marfan Syndrome was mentioned was in 1976, when I applied to join the Army, after university. I found myself in front of a Medical Board at the British Military Hospital at Millbank. The retired Medical Corps Major General who headed the Board was intrigued by my height, high palate, long fingers (and still bumpy, though stronger) chest. When I asked if Marfan presented any problem, he said “only for your tailor, my boy,” and pronounced me fit to serve.
It was only in the early 1990s, when our youngest daughter was diagnosed as being Marfanistic by our GP, that I heard the term again. I was referred with her, aged 4, and her very tall brother (9) to the Marfan Clinic in St George’s.
“We learned a great deal that day: much more was known about the Syndrome; we heard for the first time about the most serious eventualities: detached retinas and aortic aneurysms; but mercifully we were fortunate as a family: our symptoms were slight and gave no cause for concern.”
All went well (and still does with my daughter and son) until I was appointed to the United Nations force in Sierra Leone in 2001. The chest X-ray that was part of the UN medical suggested something odd about my aorta. Further tests in the military wing of Frimley Park Hospital revealed a serious aneurysm; as soon as I mentioned being on the Marfan register, I was referred to St George’s, thank God: within days I was given a new valve, and a few years later, a new aortic arch: in effect, a new lifespan, all owed to the professionalism, care and humanity of the people of St George’s, and the wider NHS.”