When Calysta Rose was born 9 years ago, it was Lavina Jacinta’s first ever experience with congenital heart disease (CHD).
Calysta was born with Truncus Arteriosus – a rare heart defect where the aorta and pulmonary artery (two of the main blood vessels of the heart) fail to separate completely during development and remain connected. Truncus arteriosus is considered a critical CHD and most children with CCHD, like Calysta, will require surgery before their first birthday. Calysta went through open heart surgery at a mere 74 days old.
For Lavina, the experience of having a child with CHD was a new one, not just for herself, but for her whole family. She recalls feeling a mix of devastation, depression, anger and fear. They only found out about her diagnosis after her birth. As truncus arteriosus is a rare condition, getting information about her child’s condition was a struggle, together with the financial challenges that come with caring for CHD.
While being a parent of a CHD child comes with its challenges, Lavina tells us it has also taught her to be resilient. Each day should be lived to the fullest and to never give up hope and faith in God. She says, “It’s important to remember that every parent has their own set of challenges and to allow people around you to help. Building awareness is also essential.”
Thanks to a successful surgery, today, Calysta, is a healthy and talented 9 year old. Not only is she a rhythmic gymnast, Calysta has also competed in the Face of Asia Jr. 2020 where she came out as first runner-up, as well as in Little Miss Malaysia 2021. Lavina always teaches Calysta to remember to be grateful. She notes that Calysta is one of the lucky ones and is able to live as close to a normal life as she can compared to others.
Lavina’s message: To all my fellow CHD parents, don’t lose hope and faith. Surround yourselves with a good support system. Let your child live as happy and as normal a life as possible. Don’t wallow in self- pity and miss out on the wonderful things in life. Remember to talk about your child’s condition and needs. Educate the people around you so they understand and can provide help and support. Sharing your experiences can provide comfort and guidance to other parents facing similar challenges. Most of all, cherish every moment with your child. #WiraJantung