Story of CHD Kids

Sorrowful September and Optimistic October” – Life and Death a Teenager with Tetralogy of Fallot - Andrew

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.

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The Value of Life, Walking Against the Wind - Damian & Lucy

Damian, Lucy’s son, was born with Truncus Arteriosus. He had to have surgery when he was 10 days old. Unfortunately, he passed away when he was 13 days old. Because of the care that Lucy’s family received in the hospital, they would like to have some positive action, so they organised a fundraising campaign for CHF. What was the biggest challenge you faced as parents of a child with congenital heart disease? The stress and uncertainty were the most difficult to deal with. Our diagnosis was not certain during pregnancy; and this left us in a state of constant worry. Then, following Damian’s birth, once we confirmed the diagnosis of Truncus Arteriosus, we felt that opened the door to more uncertainty and worry - When would Damian need an operation? What was the best age and weight? Should we try wait longer, or does this just increase the risk of heart failure? Since Truncus Arteriosus is so rare, and there are so few cases in Hong Kong in particular, it was so difficult to know what was the best thing to do for Damian. How can you overcome the challenges and the sadness? After Damian’s passing, we felt quite lost and adrift. Turning our sadness and grief into positive action really helped us. Many family and friends asked what they could do to help; but at the same time, they were often lost for words and also felt awkward and didn’t know what to say. We wanted some positive action to come from Damian’s death. We knew Damian would want to help other children if he could, especially in Hong Kong, which was his home. By raising money for the Children’s Heart Foundation in Damian’s memory, we really felt that we were making a positive difference to the lives of other children, while uniting our family and friends for a common cause. Why did you choose the Children's Heart Foundation as the beneficiary organisation? Answer: We felt very fortunate that we were able to benefit from the Kowloon Children’s Hospital in Hong Kong. The facilities and quality of care there were excellent, given the circumstances. COVID-19 made our suffering much worse, as both parents were not allowed to be together with Damian at the same time due to the COVID-19 restrictions. From our discussions with the doctors and nurses there, we asked who or what would be the most valuable organization to contribute to, and most of the cardiologists said Children’s Heart Foundation is the leading heart charity for kids in Hong Kong. (Editor's note: The Children's Heart Foundation would like to extend its heartfelt thanks to Lucy and her husband for continuing Damian's love by donating his condolences to the children with congenital heart disease.) What would you like to share with other parents who have experienced the same thing? Answer: What we would share to any other parents going through the unthinkable is this: it does get easier. It might not feel like it today, tomorrow or next week, but this experience will strengthen you and it will get easier to manage. Also, it’s okay to laugh! When things are really hard and sad, it can feel like there is an expectation from those around you to be miserable all the time, but it is okay and healthy to see the good and happiness around you. Don’t forget to enjoy life!

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The Value of Life, Walking Against the Wind - Damian & Lucy

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The warrior fights against congenital heart disease - Circle

Circle, my daughter, celebrates her first birthday on June 21, 2022! On March 5, 2021, Circle was still in my womb. This was the first time for my husband and I entered into Hong Kong Children's Hospital. We went there with heavy heart and aimed to seeking help from Dr Barnabe Antonio Rocha and Dr Chow Pak Cheong, the saviours of my daughter’s life. Dr Chow told us that Circle was suffering from Transposition of the Great Arteries (TGA), in which the two major blood vessels of the heart were misaligned. If it was left untreated, the two blood vessels would be reversed and the heart would not be able to carry oxygenated blood to the rest of the body, possibly lead to death. This message means we still have hope. My husband and I felt relieved. I can still remember that after listening to the professional advices, all four of us were smiling as we stepped out the hospital. Dr Cheng Kwun Yue’s attentive care during my private obstetrics and gynecology visits made me realise earlier that Circle was suffering from TGA, 16 weeks before delivery. I brought the referral letter to Queen Elizabeth Hospital immediately for amniocentesis and further tests. At that moment, I felt a dark cloud had surrounded me. Later, the doctor also suspected that not only did she have TGA, but also double right ventricular outlet. Dr Cheng explained that this condition would reduce the chances of success of the surgery from 95% to 50%. I was very lost at that moment, as there was not much information on the Internet. In the meantime, I could not find anyone who could tell me what to do. Fortunately, I found the Children’s Heart Foundation. Ms. Cheung, the social worker, introduced me two parents of children suffering from congenital heart diseases. They share with me their experiences about taking care of congenital heart defects children and recommend me to take the initiative to consult the doctors. Finally, on the 22 weeks and 6 days, I was able to meet with Dr Barnabe Antonio Rocha and Dr Chow Pak Cheong at the Children's Hospital. I would like to take this opportunity to thank Dr Chow for his dedication and attentiveness to make proper diagnosis of the tiny heart of Circle during every antenatal echocardiogram examination. I couldn’t believe that he spent one hour and fifteen minutes in observing the movement of the valves of the heart on the screen. As I intended to take a look on the screen as Dr Chow did, I felt dizzy after ten minutes. Although many people may think that the surgeon is the most important person in a surgery, I am sure that the medical personnel provide pre- and post-operation support, emotional support and empathy are of utmost importance for the success. I appreciated that Dr Chow always took the initiative to answer my questions and even I kept repeating questions, he always reassured me with his professional knowledge, experiences and affirmative tone. On Circle’s seventh day from birth, the seven-hour major vascular reversal operation was completed successfully. We thank Dr Barnabe Antonio Rocha for everything he did. Although my daughter’s heart was slightly swollen and slow heart beat after the surgery together with complications of pneumothorax in the middle of the operation, with all the might of the paediatric cardiologists, doctors and nurses from the Paediatric Intensive Care Unit, my daughter was able to be transferred from the ICU to the 3S cardiac ward in no time. Even though the manpower of the cardiac ward was tight and busy, all the doctors and nurses and healthcare workers have been working hard and taking care of this little infant for almost two months. A minor post-operative incident was the rejection of one of the steel wires used in the surgery. At the time, her wound had been inflamed, stitched up and cleaned up, but 13 days after being discharged from the hospital, the wound opened up with pus again and we were back in the cardiac ward. Once again, I would like to thank Dr Barnabe Antonio Rocha for identifying the cause of the pus in her wound. After identifying the cause, we were able to get back home in time to celebrate my daughter’s two months celebration. The infants with TGA are easily prone to pulmonary artery stenosis. It was inevitable that we had to go back to the Children’s Hospital for all sorts of tests and follow-up treatments. At Circle’s 10 months of age, it was difficult to get a clear echocardiogram image of her pulmonary artery. In her second echocardiogram, we were lucky to have Dr Chow’s good hand again. He helped us identify the pulmonary artery on the echocardiogram, which relieved our worries. I hope that Circle will learn to be thankful and remember Dr. Chow has helped her going through difficulties. Psalms : ‘Yea, though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me; thy rod and thy staff they comfort me.’ I understand that doctors aren’t god. There are risks hidden in every surgery. Yet, there are only two ways to go. No matter which one would have a chance of success, we want to give it a try. No matter what the outcome would be, just do it without regret. I think the reason of the children with congenital heart diseases choose us as their parents because they trust our strength to take on the challenge. I am thankful for the experience I gained in these two months. It has made my family love and cherish each other more. At the same time, I would like to thank my husband for reminding me not to put too much pressure on myself during my post-partum recovery and video-calling me so that I could see my daughter while I stayed at home. Dr Barnabe Antonio Rocha and Dr Chow not only saved Circle’s life, but also saving our family of four. We are eternally thankful for their immeasurable help. I hope that more and more young upcoming doctors will consider joining the paediatric cardiology department to save more children. In addition, I wish all the children with congenital heart disease will grow up healthily and happily.

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A Journal of Soaring Against the Wind - Janice

‘Mother Eagle teaches Baby Eagle to fly. Baby Eagle is very scared; she always flaps her wings simultaneously. Mother Eagle sees it and drives her away from the nest. Baby Eagle falls off from a cliff. She is very afraid, seeing the rocks are right in front of him. She instinctively opens her wings and flaps as hard as she can. She starts to flap her wings and slowly gets her feelings. From stopping falling, to slowly soaring….’ When Janice was one month old, she was diagnosed with Congenital Heart Disease. Due to only one of her two ventricles being able to function normally and the transposition of her great arteries and pulmonary arteries, she is more susceptible to hypoxia and asthma. Her cardiopulmonary function and immunity are also weaker than ordinary people. Even though she has undergone multiple thoracotomies, it did not restrict her dream – to study in Taiwan. ‘Kids with heart disease cannot stay in the comfort zone forever. We need to be independent and find our ways.’, Janice said. In these few years, Janice has experienced different ups and downs. When she falls, she stands up again and finds her own way again. Janice's Determination After her third surgery in Form 2, Janice's condition has stabilized and she only requires daily medication and regular check-ups. In her senior secondary year, a life planning seminar at school was the turning point that changed her life. ‘The seminar brought me the idea that I shall study overseas. I wanted to experience a life without my family, and to train myself to be independent.’, Janice said. Since Taiwan is not far from Hong Kong, and with her stable health condition, she believed that she could give it a try. Of course, this was only thought of Janice. Her parents disagreed with that. ‘My parents opposed to this plan. They were worried about my physical condition. Also, they were afraid that I could not handle my daily life.’, Janice said. The journey was long, from school applications to getting a result. It took about a year. ‘When I knew the school accepted me, I was so excited that I shouted at home! But it still did not change my parents' minds.’ Later on, Janice's father started to know more about Janice's school subject and more information about studying in Taiwan. ‘My dad started to change his mind. He thought it would be a good chance to let me go and try by myself. But my mum still wanted me to stay in Hong Kong. We had a cold war because of that.’ After calming ourselves down, Janice and her mother shared their worries and thoughts. Eventually, Janice's mother said “Yes”. ‘She did not want to over-protect me and restrict my opportunity of chasing my dream.’, Janice said. Solitude On Her Way ‘I am fortunate that my attending doctor gave me some information about the Adults' Congenital Cardiologists of Taiwan in advance. It saved my time on searching.’ From the first time to register at the hospital to be familiarised with the follow-up procedures, Janice learned to handle them all by herself. Just half a year after Janice's arrival, Janice felt unwell again. Once, she fainted without reason and was sent to the hospital. Fortunately, it was only hypotension and heatstroke. ‘My mother wanted to come to Taiwan immediately at that time. I told her, “No worries, mum. By the time you arrive, I will be out of the hospital.” I let her know that I can handle it by myself.’, Janice said. Unfortunately, when Janice had the routine cardiac catheterization in Year Three, the doctor discovered her blood vessel was narrowed. She needed to schedule another thoracotomy. When Janice was waiting for the subsequent surgery, she was sent to the hospital in Taiwan again. ‘I felt a little panting and chest tightness that day. I visited the outpatient clinic, but my attending doctor was on leave that day. By that night, I felt a tingling in my heart, so I went to the A&E.’ With the experiences throughout the years, Janice learned to calm down. She called her parents and notified them that she would go to the hospital. ‘My mother told me to call her if I have any news. I guess the previous experiences could let her be at ease a bit.’, Janice said. Action Speaks Louder Than Words After the surgery, Janice went back to Taiwan and continued her studies. She now has a placement at the hospital, one step closer to her dream of being a Respiratory Therapist. Due to the epidemic, Janice has not returned to Hong Kong for almost a year. As Janice has lived in Taiwan for several years, she regularly sees the doctor there. It was not a big problem for her. ‘When I was in Hong Kong, my mother went to follow-up sessions with me every time. When I am in Taiwan, she learns how to let me go. I can communicate more with my doctor and know more about my situation. But I guess she still wants to go with me when I am back.’ Janice laughed. After experiencing falling in Taiwan, she thinks it is essential to take good care of herself by knowing her restrictions and situations. Once she feels unwell, she will go to the doctor immediately. ‘I believe my actions is the best way to set my parents' mind at rest. By letting them see that we can look after ourselves, they will become more confident in us day by day.’ Janice also shares her situation and ways to help her with her roommates. If she has an emergency condition, her roommates will not be too panicked and know how to help her. Soaring Like An Eagle Against The Wind The farmers always protect Flowers that grow in a greenhouse. Same as children who are always protected by others. It is hard for them to try and experience actively. ‘The protection from our parents may be because of their sense of guilt to us, and they are worried about our lives. We have to know that they will leave us one day. They will not be able to accompany us forever, so we need to learn to be independent.’, Janice said. ‘As long as my body allows, I will try my best to achieve my goals and chase for my dreams. Maybe because of what I have experienced, it trains me to have a stronger heart and mind.’ Janice does not think that children with heart disease are necessarily weaker than others. Instead, they can all find their ways and soar bravely for their dreams.

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