Rare heart condition infant discharged in South Korea

On April 10 this year, in the delivery room of the new building at Asan Medical Center in Songpa District, Seoul, a baby was born after 38 weeks in her mother’s womb with a severe heart condition. The sternum that should have protected her heart was missing, and the skin tissue of her chest and abdomen was also incomplete, leaving her atrium exposed and visibly beating outside her body. When the baby cried, pressure built in her chest, causing her heart and part of her lungs to be pushed outward. In that condition, survival was considered nearly impossible.

Park Seo-rin, who was born with the rare congenital condition ectopia cordis and stood at the brink between life and death, was discharged on Oct. 21 after eight months of intensive medical care, Asan Medical Center said on the 17th. Ectopia cordis, in which the heart develops outside the body, is an extremely rare congenital disorder of unknown cause that occurs in about five to eight out of every 1 million people. More than 90 percent of patients die before birth. Even among those born alive, survival beyond three days is rare. In South Korea, there had been no reported cases of a newborn with ectopia cordis surviving. Seo-rin is the country’s first known survivor.

Seo-rin’s condition was first identified in November last year. During an initial detailed ultrasound examination, the hospital advised her parents to prepare themselves emotionally. However, the parents, who conceived their second child Seo-rin only after 14 rounds of in vitro fertilization over three years, could not bring themselves to give up. Holding on to their last hope, they visited Asan Medical Center, where doctors told them the heart’s structure itself was normal, and they decided to proceed with the pregnancy. Seo-rin endured the full 38 weeks in her mother’s womb.

After her difficult birth, Seo-rin’s condition proved to be more severe than ultrasound examinations had indicated. A case in which the entire heart was beating outside the body had never before been reported in South Korea and is extremely rare worldwide. The medical team first performed surgery the day after birth to temporarily cover the open chest and exposed heart with artificial skin to protect them.

In May, doctors carried out three surgeries to place the heart into the thoracic cavity. In June, they successfully transplanted cultured skin created from Seo-rin’s own tissue onto her chest. By the time she was 2 months old, her heart had returned to its proper position. To prevent the chest wall from spreading apart, the team then produced and fitted a customized chest protector using three-dimensional printing. Rehabilitation treatment continued alongside these procedures.

Seo-rin gradually recovered her health. After being discharged on Oct. 21, she has continued to receive outpatient care as of December. After the age of 3, she is scheduled to undergo additional surgery to reconstruct the chest wall using an artificial structure and cover it again with skin tissue.

Seo-rin’s mother said, “Even though there were extremely limited treatment cases and information on ectopia cordis, every member of the medical staff refused to give up and searched until the very end for a treatment approach, giving us hope.” She added, “I am deeply grateful to the medical team who helped us return home together with Seo-rin.”


방성은 기자 bbang@donga.com