Issue 31- Lifelong Challenge
Congenital heart disease is a common condition found in children, impacting six to eight out of every thousand new-borns at different levels. Starting from birth, patients need ongoing hospital visits, surgeries, and treatments. As they grow, patients and their families encounter a range of challenges encompassing medical, financial, psychological, and social aspects.
In this issue, we document the stories of two patients with congenital heart disease who recently underwent surgery again. They share their surgical experiences and how they maintain a positive outlook despite their prolonged medical journey. At the same time, in the face of the lifelong challenges posed by this condition, we all look forward to advancements in medicine that can bring more hope to individuals with congenital heart disease. This newsletter also features two cardiologists who discuss how new medical technologies can improve the lives of patients.
Issue 30- Bloom Confident, Radiate Brilliance
Children with congenital heart disease need to face various difficulties on their path to growth and are often hindered by the impact of their illness. However, it is important to recognize that many of these children are no different from other children and can develop their full potential after receiving treatment.
In this issue, the stories of the outstanding award recipients in the "Academic Award Scheme” are shared, for example how they turned their personal experiences into a source of learning and achieved excellent academic results, leading them to pursue careers in the medical field.
At the same time, parents of children with congenital heart disease also shared their insights on building up children's self-confidence, allowing them to shine brightly on their journey of growth.
For children with congenital heart disease, starting from the moment of diagnosis, their entire lives are tied up with the condition. Even as adults, they need to think more about themselves than the other normal person in terms of career and life planning. While others are worrying about finding a favourite job, adults with congenital heart disease need to worry about whether their future job will allow them to take frequent time off for follow-up appointments or treatment. While others are considering the time of having baby, adults with congenital heart disease need to worry about the possibility of genetic inheritance and the capacity of their bodies situation which need to be able to cope with the pregnancy process.
In this issue, the worries and concerns of different adults with congenital heart disease are shared, including the physical and psychological ups and downs of one adult with congenital heart disease during their pregnancy. At the same time, members of the patient group share their thoughts and reasons to be the volunteer in this group.
The kids with congenital heart disease need to face different challenges continuously. We hope that each family can support and encourage each other to overcome difficulties and welcome the rainbow after the rain together.
Life is always difficult, and for children with congenital heart disease, they are born with a life-changing problem. Some of the patients may never find out about their condition and illnesses throughout their grow up period, their life that had been so stable could be rocked by sudden diagnosis.
This issue we included a story of a Hong Kong representative swimmer who was discovered he had a congenital heart disease when he about to turn to full-time athlete, and how he overcame all the obstacles to get back on the swimmer's path.
At the same time, as the epidemic stabilised, the hospital services returned to the fold, an introduction of our services and new medical-related programme has been included. We hope all the children can ride on the breeze and sway like a winged bird after crossing the boundary.
“The most beautiful gift in life is to have you in it, no matter the peaks or valleys in life, you are always there for me.”
The process of growing up is full of challenges and mysteries, and for young children, it may be difficult for them to fully understand what it means to be ill. As parents, the emotions they must deal with are beyond comprehension and the psychological pressure they must endure is beyond comparison.
In this issue of Heartbeat, we explore the theme of the peaks and valleys in life through a personal story: A parent of a heart child recounts the process of her child growing up and their companionship and interactions as they experienced difficult situations. At the same time, another heart child shares their story of breaking boundaries to become a representative athlete Hong Kong and attained the title of the best in the World.
Life inevitably has its highs and lows. In the highs, we have fun together; in the lows, we encourage each other! Let us embrace the future together!
From the moment we were born, we need to go through many stages in our lives. Learning to walk and speak, studies and work, etc. However, for those children with congenital heart disease, they may have an additional challenge in their lives - heart surgeries. It may bring many life-changing situations to the children who grow up with this congenital defects.
The title of this issue is "Milestones of Life", which tells us the story about how two of our members went through the necessary stages of growing up, taking the public examinations and applying to secondary schools during the COVID-19 epidemic. In the “Voice of Children with CHD”, parents and young children share their stories of how they tackled their obstruction and gain inspiration from diaries, films or TV dramas.
Much of what goes into growing up comes from the everyday details. For children, companionship from parent is the most important thing, but parents can also be confused by the unknown possibilities. In the column parts, two therapists from different disciplines share the advices for helping parents to learn how to provide a better environment for their children to grow up in.
Life is limited, but we are eager to pursue our dreams infinitely. Perseverance can definitely lead to a small legend.
Every child has the right to fight for their dreams, even the children with congenital heart disease. They often grow up under a protective shield, and it is common for the outside world to put labels on their abilities. However, for them, there are many things they want to accomplish and hope that one day they can step out of their comfort zone.
The theme of this issue is “Soaring Against the Wind”, which covers few stories about how children and parents face different difficulties, and how they are bravely facing them. At the same time, "Voices Of The Children with CHD " will be published in a new way, children and parents are welcome to submit their daily stories and experiences to share with other members.
Flowers bloom and fade, life comes and goes. The theme of this newsletter is ‘Spreading Love Among the Living’. Life and death is a common topic for children with congenital heart disease. They have to fight for their life in every surgery. Therefore, every growth of our children is a story of a breakthrough in life.
We cannot avoid birth, senility, illness, or death. Facing disease or misfortune, congenital heart disease’s family did not give up but face hope. They wish to live fantastically in limited time and undertake ‘life influencing life’ which uses their own experience to give encouragement and energy.
With advances in technology and era, society has much more understanding about information related to congenital heart disease. For example, the ‘whole Genome Sequencing Test’ mentioned in our column is also important. As the test result is not only related to the patient but also family members of the patient and the medical database.
The value of life lies not in the length of days, but the memories and inspirations we left behind are the most praiseworthy elements that affect other's life.
Many people say: “2020 was a critical year; 2021 would not be a brighter one”. For the general public, the COVID-19 pandemic was very difficult and caused many inconveniences in life. For the congenital heart defects children and their families, besides facing their own physical challenges, the pandemic brought them further burdens and worries: “Without hospital visits, I don’t know how my child is doing.”; “How can I pay my child’s medical expenses when I have been on unpaid leave for a long time?”; “Diseases are are rampant in the city, can my child only stay at home?”
When fending off the pandemic, we will inevitably feel powerless, hopeless, frightened and faltered. However, we believe that as long as we continue to walk together, stay together and help each other, we will find the beautiful parts in our lives.
Starting from this newsletter issue, we will add a new column to involve more positivity into the daily lives of heart children and their families.