Born with Bluish Hands and Feet: The Journey of Kaluna and Her Mother

Kaluna was born with a congenital heart defect whose signs were already visible on her very first day. In this video, her mother, who lives in Bekasi, describes how the family went through the diagnosis, the surgery, and the days of waiting outside the ICU while Kaluna was still a baby.

The First Sign at Birth

“When Kaluna's first cry was heard, her hands and feet were blue,” her mother recalls. The bluish color led the doctor to suspect a congenital heart disease. A bluish tint like this can be a sign that the blood circulating through the body is low in oxygen. After Kaluna underwent screening tests, the diagnosis was confirmed: CAVSD.

Complete Atrioventricular Septal Defect (CAVSD) is a congenital heart defect in which there is a hole in the wall at the center of the heart, between the upper and lower chambers, together with a problem in the valves that separate them. The news left her mother sad, disappointed, and afraid. Kaluna was still a baby, and the family knew very little about heart disease.

Finding a Team That Communicates

Kaluna's mother searched for information on Instagram and YouTube until she found Heartology. Her first impression came from the nurses who welcomed them. In her view, the nurses she met on that first visit were very good at caring for Kaluna and the family.

She also felt reassured because the doctor treating Kaluna was very communicative in explaining the condition and the treatment plan. At Heartology, Kaluna underwent cardiac catheterization, an examination using a thin tube inserted through a blood vessel to assess the heart from the inside. The medical team then planned a CAVSD repair while Kaluna was still a baby. A CAVSD repair is an operation to close the hole in the walls of the heart and repair its valves, so that blood can flow along the right path.

Waiting Outside the ICU

After surgery, Kaluna was cared for in the ICU. For her mother, the time spent waiting outside the ICU was still filled with anxiety, even though the operation was over. “Technically the operation was a success, I was relieved, but I was still worried,” she says honestly.

Amid that worry, she felt that the care was directed not only at Kaluna, but also at the family waiting for her. “Excellent service not only for the patient, but also for the family,” she says.

Kaluna's mother now wants to share this story with other parents facing a similar struggle. Every child with a congenital heart condition has a different journey. If your baby shows signs such as bluish skin, lips, hands, or feet, consult a doctor promptly so the baby can be examined further.