Faqih’s Journey Through the Fontan Procedure for DORV

Faqih is a young boy from Lampung who was born with a congenital heart defect called double outlet right ventricle (DORV). In this condition, the two great arteries that should each arise from a separate pumping chamber both come out of the right ventricle. In this video, his father shares the family's journey, from the first suspicion to Faqih's Fontan procedure at Heartology.

The First Signs

A problem with Faqih's heart was first suspected during a routine visit to the pediatrician shortly after he was born. The doctor noticed something unusual about his heartbeat. About 20 days after birth, Faqih went back for a check-up. Because there was no pediatric cardiologist in the area, he was referred to a local adult cardiologist. No procedure was done at that stage, and the family was later advised to take him to a hospital in Jakarta.

The news about his heart hit his parents hard. “We were really down, wondering how this could happen,” his father recalled.

Clear Explanations at Heartology

At Heartology, Faqih had an initial assessment, and the family received a detailed explanation of his condition. It was given in language that lay people could easily follow, so Faqih's parents could understand every step. “Because he was already being treated by expert doctors, we felt at ease. We had received a good explanation,” his father said. He also remembers how friendly the doctors and the whole team caring for his son were.

According to his father, many people were involved in Faqih's care, from the arrhythmia doctor, the pediatrician, the cardiologist, and the anesthesiologist to the nurses.

Undergoing the Fontan Procedure

As part of the treatment plan for his heart, Faqih underwent a Fontan procedure with fenestration. The Fontan procedure reroutes blood flow so that blood returning from the body can flow directly to the lungs without having to be pumped by a ventricle. The fenestration is a small opening made on purpose to act as a pressure release. This kind of treatment depends greatly on the anatomy and condition of each child's heart.

At the time of filming, his father said Faqih had become more active. According to him, Faqih's oxygen saturation, once around 46 percent, had reached 95 percent. He has a message for other parents: do not ignore unusual signs in your little one; recognize them, have them checked, and find out more about your child's heart. He also reminds families to stay away from unhealthy habits. “Prevention is really better than cure,” he said. He also encourages families facing a similar test to stay strong, because everyone has their own trials to face.