#WiraJantung Raizz’s heart journey began while he was still in the womb, at 22 weeks. Raizz has a rare kind of congenital heart defect – called pericardial teratoma. These are rare tumors that arise from the lining of the heart. As these tumours grow, they begin to cause other problems, like a build-up of fluid around the heart.
The buildup of fluid made it difficult for Raizz’s heart to pump properly. That’s when Nadira, Raizz’s mother, went to see a maternal-fetal medicine specialist. Maternal-fetal medicine specialists are able to do procedures on the fetus in the womb, and they managed to remove the extra fluid around Raizz’s heart thrice, even before Raizz was born. At 33 weeks, Raizz was safely born and at a mere 13 days old, he then went through his first open heart surgery.
Talking about the first time she found out about Raizz’s condition, Nadira shares, “I was confused and helpless, but redha (accepting). My husband and family have been the greatest support system,”
“I was blessed with specialists from MFM, Paeds Cardio, Surgeon, Neonatal and the teams. They were always on point whenever I have questions,”
Navigating finding out information about heart conditions for your child can be tricky. Nadira shares, “We tended to immerse ourselves with Raizz’s diagnosis, treatment plan etc. but that somehow made us feel overloaded and stressed out,”
“Eventually we made sure that we equipped ourselves with knowledge from the doctors and only reputable websites. But of course we avoided being too dependent on online resources and always do check and balance with the specialists. Load yourselves up with knowledge and never compare your child’s diagnosis with the others. Being in communities allows you to understand better with layman terms, but your child’s doctor is the one you should always refer to,”
“I managed through tough times by having a support system from my husband, family, friends and colleagues. Nevertheless, always return to Allah and make do’a to put yourself at ease and redha with His plan. For what was written for you was written by the greatest of writers,”
Thanks Nadira for sharing Wira Jantung Raizz’s story!