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Mr James Barnard, Consultant in Cardiothoracic Transplantation, Wythenshawe Hospital, Manchester
Dr Clive Lewis, Consultant Cardiologist and Transplant Physician Papworth Hospital, Cambridge

Heart Transplantation for Congenital Heart Disease (CHD)

Forty-six years ago, on December 3rd 1967, the world’s first human heart transplant was performed by Christian Barnard in Cape Town. It remains one of the most iconic moments of the 20th Century. Heart transplantation has gone on to become a standard treatment for end-stage heart failure, with excellent survival rates. (81% of adults reach one year, but complications affect the longer term with 51% surviving 10 years). Heart and lung transplantation now face two major challenges. One is the increasing numbers of referred patients and the other is the falling number of suitable donor organs available. Six units in the UK now carry out adult transplantation: Papworth in Cambridge, Harefield in London, Newcastle, Wythenshawe in Manchester, Birmingham and Glasgow.

Over the last 50 years, the huge success of cardiac surgery for the treatment of CHD has avoided or delayed the need for heart transplantation for many children and adults. However, due to this surgical success, the number of GUCH patients who would potentially benefit from a heart transplant is increasing, while the number of donor organs has declined over the last decade in the UK. More than 300 heart transplants were performed in 1991 compared to around 130 in 2011.

The International Society of Heart and Lung Transplantation database shows excellent long-term survival for GUCH patients after transplant (nearly 40% are still alive after 20 years). However, due to the complexity of the surgery, CHD is a significant risk factor in the first days and weeks after transplantation. This is particularly relevant when patients have had previous surgery, which makes the transplant more technically challenging. As well as this, such patients are more likely to have developed antibodies against donor heart tissue types, which reduces the number of compatible donors and makes them more likely to reject the donated heart. Patients who have had certain previous intervention such as the Senning or Mustard procedures or Glenn shunts are generally considered to be relatively low risk, whereas patients who have undergone the Fontan procedure are more likely to carry higher risk. Nonetheless, some transplant centres are now reporting that early survival for carefully selected Fontan patients is almost as good as non-GUCH patients.

Heart-Lung Transplantation for CHD

In 1981 Bruce Reitz performed the first combined heart-lung transplant in Stanford, USA, and in 1984 Professor John Wallwork performed the first successful heart-lung transplant in Europe at Papworth. Heart-lung transplantation is a major and rarely performed treatment option for select patients with end-stage heart and lung disease. The most common need for heart-lung transplantation (accounting for 35.7% of operations) is from patients with CHD. Other common needs are pulmonary hypertension and cystic fibrosis. The number of heart-lung transplants performed worldwide peaked in 1989 with around 280 transplants. Today sees a slow and progressive decline with fewer than 100 heart-lung transplants per year currently being performed worldwide.

Over the last few years, with the reducing number of hearts available for transplantation, ventricular assist devices (mechanical pumps, usually surgically implanted) have become an increasing necessity for both acute and chronic heart failure. The good news is that technology in this field has advanced rapidly so that the pumps are now smaller, lighter and more reliable with a design life of five to eight years. In the UK, these pumps are used to buy time and allow patients to become as fit as possible before transplantation. While the development of these pumps is evolving, there are some technical concerns over their use in GUCH patients as this may be limited by challenges of unusual anatomy and previous surgery.

What can be done to reverse the decline in the number of transplants performed for patients with CHD? Increasing UK donation rates will go a long way to improve the chances of receiving a transplant, but other factors may also help, such as techniques to allow the original heart to work better for longer. This will require innovation, research and close collaboration between surgeons, congenital cardiologists and transplant units as well as GUCH patients. Nearly everyone would take an organ if they need one, but only 31% of the UK’s population have joined the Organ Donor Register. Spread the word and together we can increase the number of transplants.

If you’d like more information, support or advice about heart transplantation, speak to your cardiac liaison team or contact our Patient Helpline 0800 854759

For more information about all transplant matters, including how to register as an organ donor, please visit

This article was first published in GUCH News issue 73 Summer 2013.

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