Calling all organ donors: Hong Kong needs you
The plight of a boy with a rare coronary condition has turned the spotlight on the city's organ donor programme, writes Rob McGovern
Jayden Oh has been through a lot for someone so young. In 2013, aged just five, he had a triple heart bypass, and while the surgery went well, he's still not out of danger. It's been a long and bumpy road for Jayden: on the one hand, his story credits the great support from Hong Kong's medical staff, but also exposes the dire state of its organ donor programme.
It's also been tough on Jayden's parents, British-born Dave and his Hong Kong wife Meko, who first noticed something wrong with their son when he was nine months old. He had a high fever, blood-shot eyes and a "strawberry tongue". He was diagnosed with Kawasaki disease (named after Tomisaku Kawasaki, the Japanese pediatrician who first identified the condition in 1961). It causes inflamed blood vessels, but its rarest and most serious effect is on the heart, where, if untreated, it can cause fatal aneurysms.
Although the cause of the disease is still unknown, it is treatable and the mortality rate, even without treatment, is low.
In Jayden's case, however, the disease had a tight grip. He was given doses of intravenous immunoglobulin, but failed to respond. Although the disease subsided after about three weeks, the damage - two aneurysms in his coronary artery - was done.
His heart function was normal, so surgery was deemed unnecessary, particularly given his age. However, in June last year, his condition deteriorated. "He had extreme fatigue, no appetite, was vomiting. We took him to A&E and an echocardiogram showed low heart function; he was immediately admitted to the special care unit," says Meko.
His surgeon, Dr Tim Au Wing-kuk, chief of cardiothoracic surgery at Queen Mary Hospital, says Jayden had about one-fourth of normal heart function when he was admitted.
Less than a month later, Jayden had triple bypass surgery. Today he bears two huge scars - one on his left thigh and one on his chest - where veins and arteries were removed to be used as grafts. A third graft was bought from the US for HK$70,000, which the Children's Heart Foundation paid for. The grafts usually have a 10- to 20-year lifespan, which is sufficient for people in their 60s or 70s, but as Jayden is so young, he will need an intervention later. "Worst case scenario, he might need a heart transplant. Hopefully, by then medical advances will have new treatments to replace bypasses or transplants," says Meko.
Jayden's case has also turned the spotlight on another issue - the city's poor organ donation rate, which is compounded by cultural taboos and a lack of awareness.
Au says although the situation is improving, it's far from adequate. According to the Health Department, there were 146,000 names in the Centralised Organ Donation Register in June, compared with 69,000 in 2010. "In the past five years, the government has done a lot to promote organ donation," Au says. "However, even though it has increased, the number is still unsatisfactory. The best [heart donation situation in the region] is in Taiwan, but we're catching up."
At a recent organ donation roadshow in Mong Kok, Dr Chak Wai-leung, a kidney specialist at Queen Elizabeth Hospital and vice-president of the Hong Kong Society of Transplantation, echoed Au's comments.
"Every year we do fewer than 100 [kidney] operations in Hong Kong, but have about 2,000 people on a waiting list for a kidney," he says.
Chak says organ donation is often a taboo subject because Asian cultures traditionally require that the body stay intact for the afterlife, and people seldom talk about life and death. "So, even if they agree to be donors, they often won't tell their families," he says.
Hongkongers who want to donate their organs should go to organdonation.gov.hk which also addresses questions and offers support.
When people donate an organ, they don't just help the recipient, says Martin Wong, former chairman of the Hong Kong Transplant Sports Association. "You won't only be saving one life, but the lives of the whole family," he says.
Wong speaks from personal experience: he received a kidney 12 years ago after five years on renal dialysis, and often recounts his personal story to the public. "I tell them I'm on my second life; that I had a problem and someone helped me by donating an organ."
The Ohs are well aware of the shortage of organ donors, which is why they raise funds and awareness for the Children's Heart Foundation.
A year after his triple bypass, Jayden takes five medicines twice a day, which is likely to continue for the rest of his life. He visits the hospital every two months for check-ups and while he's getting stronger, it's unlikely he will regain full heart function.
Jayden's parents try to keep his life as normal as possible. He swims twice a week and eats French fries without salt. "He runs around like crazy in the playground; when I see him short of breath, I ask him to rest," says his mother.
"Jayden is alive because we had access to the best medical technology and an outstanding team of doctors and nurses at Queen Mary, and we have overwhelming support and love from our friends, family and community. He wouldn't have survived without any of these."
Even so, the inevitable intervention and the chance of Jayden needing a heart transplant prompted the Ohs to decide to move to London.
"The medical system in Hong Kong is very good, but I don't think a lot of money and resources go into research," Meko says.
"In Hong Kong, they adopt what has been invented in America and Europe."