Adult 'Norwood' patient visits ECHO

This article was written by Jo Wilson, who is the Chief Executive of ECHO (the Evelina Children's Heart Organisation), a charity that looks after heart families treated at the Evelina Children's Hospital in London. You can go to ECHO's website by clicking here.

On 28th May my daughter Cissy and I were really lucky to meet a young man called Tory Jenkins. Tory is 25 years old and is one of the oldest surviving Norwood patients in the world.

In fact, Tory, who is American and lives in Colorado, had his surgery performed by the famous Dr Norwood who developed the Norwood procedure in the early 1980s.

The Norwood procedure is usually performed just after birth. It allows the right side of the heart to do all of the pumping. The procedure was first performed successfully in 1981.

Tory is the nephew of the ward clerk on the Cardiac Ward at the Evelina, and she had told him all about the work ECHO does at the hospital, so Tory was keen to be introduced to us and hear more about us, so we arranged to meet up at the Evelina. Tim Emsley, ECHO’s new Youth Development Officer also came along and was inspired to hear about Tory’s life and the challenges he’d faced as a teenager.

Left to right: Cissy, Tory, and Jo Wilson, Boss of ECHO (and Cissy!)

Tory is a wonderful, caring young man who has led life to the full, taking part in sport and lots of other activities. He is tall and fit and (I hate to say this – it’s such a cliché!) you would never know there was anything wrong with him from looking at him! He is engaged to be married, moving into his own place with his fiancé and hoping to start a family of his own. Interestingly, Tory told us that there was not much support available for heart families in the USA and that his dream would be to set up a support group like ECHO or Little Hearts Matter.

This video from the Children's Hospital of Philadelphia gives an idea of what the surgeon does during a Norwood procedure.

He also said that lots of families struggle to pay for their child’s treatment and that made me thankful that Cissy was treated here in Britain under the NHS! I thought you might like to see a couple of photos of Tory with his family.