Northern Ireland woman awaits surgery after years hiding chest condition

Charlie Clarke, 26, is waiting for surgery for pectus excavatum, a congenital condition that can leave the chest sunken and, in her case, compress her heart and lungs. She says years of shame and delayed diagnosis left her feeling isolated; in Northern Ireland, she is one of 85 people waiting for surgery for pectus conditions.

Clarke, from County Down, said she hid her chest from classmates and even kept the severity of her condition from her parents. During school PE, she sometimes hid in the toilets to avoid comments about her appearance. “Having pectus excavatum, which is a disability and a deformity under my shirt, was at times hell,” she said.

She said she was previously misdiagnosed, including being told she had anxiety. At 23, after a scan showed her heart was compressed, she was referred to a thoracic surgeon. By then, she said, she was considered too old for non-surgical treatment.

Clarke is now due to have two metal bars placed in her chest, with a plate in her breastbone, to help her heart and lungs return to their natural positions. She hopes speaking publicly will raise awareness and help her 11-year-old sister avoid a similar wait.

Niall McGonigle, the surgeon treating Clarke, says his own experience of a pectus deformity and surgery as a teenager drew him to the specialty. He said patients in Northern Ireland can be dismissed as seeking cosmetic surgery, although the condition can restrict the heart and lungs. He also said Northern Ireland does not provide non-surgical treatment for pectus excavatum, leaving young people to travel to England.

The Department of Health said 85 people were waiting for surgery for pectus conditions, with five waiting more than five years. It acknowledged that some patients had faced lengthy waits, citing patient numbers and other demands on thoracic surgery. The department said extra funding had enabled additional pectus procedures over the past three years, and that a further proposal was agreed to reduce both the number of people waiting and waiting times.

Pectus excavatum varies in severity. Treatments can include vacuum-bell therapy or bracing, which are generally more effective when the chest wall is still flexible. The department said a service commissioned in 2023 provides non-surgical bracing for pectus carinatum, a different chest-wall condition, and that its impact would be evaluated.