Hope for Every Patient Like Me
Hope for Every Struggling Parent of a Patient Like Me
October 4th, returning to the Children's Hospital for a follow-up consultation.
With the doctor’s arrangement, I had a series of X-ray scan, electrocardiogram and other examinations, then made an appointment for further follow-ups. I stepped out of the main entrance of the hospital, with the warming sun in the blue sky and comforting breeze brushing my face, I owe my heart-felt gratitude towards Dr. Yung Tak Cheung, Dr. Chau Kai Tung, kind-hearted and beautiful nurses, and all the helpful social workers from the Children's Heart Foundation.
Seventeen years ago, I was born with congenital heart disease, and have later been accurately diagnosed with severe Tetralogy of Fallot, a disease that has been sentenced to death by God before birth. Today, just after my seventeenth birthday, I can still walk in the sun, breathe the air of the atmosphere, play my favourite piece on my piano, all because I was born in Hong Kong, fortunately privileged with superb medical infrastructures and dedicated medical practitioners, which have more than once rescued me from the sickle of Grim Reaper.
All along my life thus far, I knew that the biggest gate of hell was waiting for me. Although I have had bypass and correction surgeries when I was a child, however, due to the lack of a normal heart valve, conditions aggravated and the backflow of blood became more and more severe over the years, the wall of the right ventricle became thicker, which could gradually lead to heart failure. Three years ago, I underwent a MRI examination at Queen Mary Hospital, which suggested a decline in cardiac function. The functional data were approaching critical heart failure values. I was then put on the waiting list for the most complex heart surgery, hence greatest challenge in my life.
In the ignorance of my childhood, I went to school, carried out physical activities, learned piano and enjoyed life like any other normal child, vaguely felt the approaching of death. On the other hand, I have been optimistic because Dr. Yung Tak Cheung accurately diagnosed me at the most dangerous moment of my life as a baby, decisively arranged to pursue surgery immediately, and brought me back from the verge of death. Dr. Chau Kai Tung has been monitoring my heart conditions like my guardian angel. Social workers of the Children's Heart Foundation accompanied me and saw me through my growing up, reached out to me timely whenever I felt hesitant and lost, and offered warm and comforting consolations and constructive information.
Then came the rage of COVID-19 pandemic, forcing us to consciously stay at home and patiently wait for the surgery. On September 16, news media reported widely that “Dr. Barnabe Antonio Rocha, a cardiothoracic surgery consultant at the Children's Hospital, was leaving Hong Kong. There were only 12 cardiothoracic surgeons in Hong Kong at this level of seniority including Dr. Barnabe Antonio Rocha. This will affect patients who require complex surgeries.” It was like a bolt from the blue to patients like me and their parents.
I watched my mother grieving and weeping every day. We felt so lost and helpless, and we tried calling everyone begging for help. We even resort to going online to trace Dr Barnabe Antonio Rocha. For the first time in my life, I wanted so eagerly just to be alive! I love my parents, my teachers, my friends, I love science and piano, and I need more time to achieve my goals in life!
Friends around us offered different suggestions, such as going to the United States to find a good hospital for surgery, following Dr. Barnabe Antonio Rocha to wherever he goes for surgery, and even searching for other private practicing cardiologists in Hong Kong.
Before long, my heart aches seeing my mother, who holds a doctorate title, having her eyes swollen from crying, substantially losing weight due to sleepless nights, losing her former beauty and grace. I silently endured all the pain and tolerated the fatigue caused by heart failure, as well as the helplessness of where to go for the surgery, because I cannot bear melancholy seeing my mother worry and suffer further. After my mother made various calls for help, we eventually got a reply and quickly arranged for me to return to the clinic on an earlier date. That reply came like a faraway shore I see after drifting helplessly in the cold ocean for an infinitely long time.
Today, I saw Dr. Yung again. His elegant smile gave us tremendous consolation. He painstakingly analyzed my condition in great details and assured me that the surgery had entered the scheduling procedure. He said that it is really regrettable that the Children's Hospital is losing the excellent Dr. Barnabe Antonio Rocha, but the Hospital still has other excellent surgeons, such as Dr. Au, Dr. Cheung, and an excellent team of doctors and health care workers. We were assured that my surgery can go well without worrying too much.
Finally, I want to express my deepest gratitude……
……to Dr. Yung Tak Cheung: Thank you for being able to explain patiently from the standpoint and perspective of a sick child. Your gentle smile is the essential driving force for my broken heart to recover.
……to the news media: When reporting news, please do not overplay the pessimistic side, please understand the patients’ desire to survive, and please also report the positive aspects rendering a well-balanced and comprehensive coverage of news.
……to the Hong Kong Hospital Authority : I am extremely grateful that the Hospital Authority received our call for help, immediately arranged a follow-up visit so that I could receive timely medical information, and allowed me to relieve my nerves that were about to break down and collapse.
However, can the Public Relations Department of the Hospital Authority immediately contact the media whenever there are one-sided news reports, and use every means to reach out to the general public publicizing the hospital's excellent surgeons, medical-care team, and state-of-the-art facilities, and hence absolute competency for all complex heart surgery, and open a door for help for all patients in the Territories?
……to all fellow patients like me and their family members: Don’t be hesitant to actively contact the hospital so that you can keep abreast of the patients’ conditions and the hospital’s arrangements, understand the help that are offered by the Children’s Heart Foundation, and never allow yourselves to fall into a whirlpool of pessimism and helplessness.
Although I was not as lucky as Kansas (a.k.a. "Little Tough Guy"), who was immediately arranged for Dr. Barnabe Antonio Rocha to perform the surgical operation before leaving Hong Kong, I still want to sincerely wish him best of luck. Although I still don't know when and which surgeon will perform the surgical operation for me, but after seeing Dr. Yung today, I walked out of the hospital door with a lighter mood. With the excellent team of doctors and nurses in Hong Kong, the dedicated team of the social workers, and the top-notch medical facilities and system, I have absolute confidence and faith that I will survive!
I will say goodbye to the Sorrowful September and enter the Optimistic October.