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!