Adult Congenital Heart Disease (ACHD)
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1 in 100 babies born has a heart condition called Congenital Heart Disease (CHD).
More than 66,000 Australians live with Congenital Heart Disease (CHD).
More adults than children live with Adult Congenital Heart Disease (ACHD).
What is Congenital Heart Disease?
Congenital heart disease is a general term for any defect of the heart, heart valves or central blood vessels that is present at birth.
David's story
David was just a few hours old when he was diagnosed with Tricuspid Atresia. This is one of the most complex congenital heart conditions to manage, because the right-side of the heart is underdeveloped, and unable to pump oxygen-rich blood to the rest of the body.
Within hours of David’s birth, surgeons performed open-heart surgery to keep him alive and at both six months and four and a half years of age, he underwent “staged reconstruction” of his heart. Following those procedures, he had a Fontan Procedure (lets oxygen-poor blood from the lower body bypass the heart and go straight to the pulmonary artery), and by 10 years of age, he had his first pacemaker was implanted.
Note ‘David; is not a real name to protect the privacy of the many people cared for at Westmead’s ACHD Clinic.
ACHD Symptoms in Disguise
In his early 20s, David was fit and healthy, careful with his diet, and was enjoying life with his fiancée. A month after his wedding, he started having severe stomach pains.
David consulted his GP and was shocked to learn it was his heart. “I honestly thought it was my appendix or gall bladder.” David’s Congenital Heart Disease had caught up with him as an adult, even after having “staged reconstruction” of his heart as a child.
David’s Adult Congenital Heart Disease specialists at Westmead Hospital told him that the blood vessel taking blood from his legs and abdomen to his heart had narrowed, and he needed a stent to open it up.
Westmead Hospital Adult Congenital Heart Disease Specialist, Dr David Tanous said, “David’s Fontan circulation was failing, and we were fortunate to avoid the complications of a fourth open-heart surgery by inserting a stent into his heart via keyhole surgery.”
“After this procedure, most people like David live another 30 years before needing a heart transplant,” said Dr Preeti Choudhary, Adult Congenital Heart Disease Specialist also at Westmead Hospital. “We aim to put off the need for a heart transplant in a patient as young as David for as long as possible, since heart transplants come with their own potential complications.”
The importance of Regular Treatment
A crucial part of monitoring people like David is to measure their heart-lung function with a Cardiopulmonary Exercise Test. Also known as a ‘VO2’ test, this specialised stress-exercise test measures a body’s heart and lung function in response to exercise. This test is highly sensitive and can detect subtle changes in heart-lung function, and well before a patient reports symptoms like shortness of breath, abdominal pain and swelling.
Currently, Westmead Hospital patients needing a Cardiopulmonary Exercise Test are referred to another major Sydney hospital for the test. However this test is in high demand, with long wait times and has been known to breakdown forcing patients to make a second trip to the other major hospital.
David pointed out that, “Having a Cardiopulmonary Exercise Test at Westmead Hospital would be life-changing for me, giving me peace of mind knowing that the specialists know precisely my heart-lung function, and can treat any potential problems early, before they become life-threatening emergencies”.
“I have never taken my health for granted, but this scare has really made me refocus and double-down on living healthily and keeping up my regular appointments with the specialist cardiology team at Westmead Hospital,” concluded David.
