Mothers warn Iceland lacks reliable care for children with clubfoot

Several mothers say children born with clubfoot in Iceland face uncertainty over treatment, with the only orthopaedic doctor at Landspítali hospital who has provided the care due to take leave. Without proper treatment, children risk lifelong disability and incapacity, mbl.is reports.

Landspítali told mbl.is it is working on a service agreement with a sister hospital in another Nordic country, possibly Karolinska University Hospital or Sahlgrenska University Hospital. The mothers question whether those are the best options and say they know of no Icelandic child who has received clubfoot treatment in Sweden.

The four mothers interviewed by Morgunblaðið took their sons to the same doctor in the United States, whom they describe as one of the world’s leading specialists. They say a leading clubfoot specialist at Karolinska has also left the hospital, leaving parents of Swedish children worried.

The mothers are working to revive Fima fætur, a parents’ association for children with clubfoot, to provide support and information. They say connecting with other parents is particularly important because families take on a substantial part of treatment in later stages, and children may need braces for several years.

Kolbrún Íris Káradóttir, whose six-year-old son was diagnosed before birth, said the news came as a shock. She said she waited two weeks after the diagnosis for a specialist to discuss what would happen next. Her midwife advised her not to search online, she said.

Valgerður Sigurðardóttir, whose son is five, said there had been no active parents’ group for several years. She and other parents had relied on hearing from one another, she said. The mothers also say that having only one doctor provide care makes it difficult for families to seek another medical opinion.

About one in every 1,000 children is born with clubfoot, and it is 50 per cent more common in boys than girls. Treatment often begins in the first weeks of life. The most common approach is the Ponseti method, which gradually corrects the foot’s position through repeated casting. Some children need surgery on the Achilles tendon. After treatment, children wear special shoes joined by a bar to maintain the corrected position and reduce the risk of the clubfoot returning. Long-term follow-up and physiotherapy may also be needed.