▲Fung's parents stood by him through all ups and downs during the heart transplant journey. They could finally go home together to celebrate a new chapter of life.

13-year-old Fung had been a happy and healthy boy. In August 2021, he suddenly had breathing difficulties and fever and thought it was just a cold, but his condition deteriorated rapidly. He suffered from heart failure and was transferred to the Hong Kong Children's Hospital (HKCH). He was diagnosed with dilated cardiomyopathy. For the next six months, he was bedridden at the Paediatric Intensive Care Unit, relying on a biventricular assist device to survive. Miracle finally arrived. He got a donor's heart and became HKCH's first heart transplant patient.

Fung's dad Mr Leung still shuddered when recalling how it first happened, "Fung slipped into a coma all of a sudden. When I saw him again, he was inserted with lots of tubes. I almost collapsed. I dared not touch him, fearing that I might mess up the medical equipment. I could only gently brush his hand a few days later."

▲Fung relied on multiple medical devices to stay alive in the PICU.

The healthcare team first used ECMO to treat Fung. As his condition did not improve, a left ventricular assist device was implanted to support his heart function. Patients installed with the device can usually be discharged temporarily, but Fung’s condition was so critical that a biventricular assist device had to be used at last, and going home was not possible. Heart transplant thus became his only hope to survive.

It was a race against time. The hospital arranged a press conference to publicly appeal for deceased heart donation, with the hope to save Fung and other patients' lives.

No one could predict when a new heart would be available, but risk was increasing day by day. During the wait, Fung developed complications like infection, subcutaneous haemorrhage and kidney failure. Mr Leung said, "It was very torturing to see him suffer like this. My wife and I kept encouraging him to have faith and persist."

The healthcare team did everything to keep Fung in his best condition for the heart transplant. Doctors of different specialties kept adjusting treatment according to his conditions. Designated nurses monitored the medical devices round the clock and prevented him from getting infection. Physiotherapists designed exercises that could be done in bed to strengthen his muscles and cardiopulmonary function. Dieticians also ensured he got sufficient nutrients.

▲Fung's mother took care of him at bedside.

▲Hoping to strengthen his muscles and cardiopulmonary function for the surgery, Fung paddled in bed with all his might.

One night when Mr and Mrs Leung were resting in the family overnight room in the hospital, their phone suddenly rang. "The doctor told us that there was a heart for our son. The wait was finally over! My wife burst into tears immediately. But it was a big surgery afterall, so we also felt worried."

Meanwhile, preparation for the surgery was in full swing. The healthcare team conducted various examinations on Fung, liaised with different hospitals and departments, and ready the equipment and supplies. The multiple adhesions inside Fung from his previous open heart procedures added to the surgery's complexity. With the concerted effort of cardiothoracic surgeons, anaesthesiologists, perfusionists, OT nurses and supporting staff, the eight-hour surgery was a success.

▲HKCH Cardiothoracic Surgery, Cardiology, Anaesthesiology & Perioperative Medicine, Pathology; Queen Mary Hospital's Cardiothoracic Surgery; Grantham Hospital's Cardiac Medicine and organ donation coordinator participated in Fung's heart transplant.

A week later, Fung was transferred from the PICU to cardiology ward. When the family reunited, they were moved to tears. "Fung said he missed us very much. His tubes were gone, and we finally felt relieved," said Mr Leung.

In the rehabilitation phase, the cardiology team performed regular echocardiography and cardiac catheterization on Fung to make sure his new heart functioned well. With the help of physiotherapists, Fung worked very hard to improve his muscle strength and gait using equipment like electric tilt table and walker. The prosthetics and orthotics team also tailor-made foot orthoses for him.

▲Fung using parallel bars for gait training under the guidance of a physiotherapist.

▲Fung worked hard on rehabilitation and regained muscle strength.

▲When Fung was about to discharge, doctors from the Cardiology and Cardiothoracic Surgery team explained the rehabilitation progress to him and his father.

Fung recovered well and was discharged three months after the transplant. It was a sunny day. When he stepped out of the hospital, he immediately took some photos of the surrounding with his phone. He said excitedly, "I am free now! I don't need to stay in bed anymore!" He was deeply grateful to the organ donor and the family, "I believe it was not an easy decision to make during such a tough time. They are very kind-hearted."

Fung had endured some pretty tough times during the course of treatment. Every wound dressing, stitching and rehab training was a battle, but he told himself not to give up. Support from healthcare staff, his parents and friends also carried him through. "Thanks to all the doctors who cure me. The nurses are very nice and always concerned if I have any discomfort. They would hold my hand when I am in pain, and chat and play video games with me. Exercising is really not my thing, but the physiotherapist always has her way to motivate me to work harder."

Mr Leung said, "We owe much to the professional staff for their extraordinary care. They treat Fung more than just a patient. They care about his feelings, and put up with his tantrums. They would even put him to sleep by listening to music with him. He could really count on them and feel at ease."

▲PICU staff cheer on Fung.

▲Due to Covid-19, Fung had never seen the faces of the PICU nurses who took care of him for half a year. Therefore, the team asked an illustrator to draw a picture of everyone without mask for Fung as a souvenir.

▲Fung made a thank you card for the PICU staff.

After going through this life-changing event, Fung cherishes the time with his family and friends more. The healthcare team at HKCH will continue to walk with him to overcome the challenges in the days ahead.