If you have not heard of craniosynostosis, it is understandable, as the disorder affects only one infant out of approximately 2500. A recent article published in the Washington News Post followed three-month-old Daniel Bradly in the UK and his recovery from a life-saving operation to reconstruct his skull.

The disorder is characterized by joints in the baby’s skull that fuse together, preventing room for the brain to expand. Babies normally have tiny gaps in their skulls that make room for the brain to grow as the child grows.

But babies with craniosynostosis have one or more gaps that fuse earlier than normal. This precludes the skull from growing.

If the fusions are left untreated, the head develops an odd shape, the child develops learning or eye problems, and in some cases, it can lead to death.

About the Operation

Although Daniel was three months old at diagnosis, the doctors waited until he was one year old to perform the extremely delicate operation. His parents were told that Daniel’s brain would grow, but it would eventually be crushed because his skull had fused prematurely.

The procedure consisted of dismantling then rebuilding pieces of his skull. The operation has been likened to working with a jigsaw puzzle.

Daniel’s mother, Victoria, explained that Daniel’s skull was broken into pieces and his forehead was moved upward so that he lost the bones behind his eyebrows. But she is comforted by the fact that without the operation he would have died.

During the operation, the doctors formed a gap in Daniel’s head allowing his skull to fuse again as he grew. The operation was a success. Daniel is now ten years old and has been able to lead a normal life. However, the surgery left Daniel with a giant uneven scar across the top of his head.

Daniel is Giving Back

Daniel is pleased that he can “pay back.” His inspiration for a triathlon-for-charity came to him after he watched the Tokyo Olympics. He announced to his mother that he was going to hold a triathlon for the Birmingham Children’s Hospital where his nine-hour, life-saving operation was performed.

Daniel and his family began a GoFundMe page. Their target is £1,000 but to date, they have already raised almost £3,500.

While Daniel was in the hospital his family stayed at the Ronald McDonald Charity House which is on his list of donations. The funds will also be used for new equipment for the hospital and improving the welfare of staff and patients.

Daniel will be participating in the triathlon on April 24th by biking six miles, swimming 500 meters, and running three miles. He has been training at his local swimming facility and is honored that one lane in the pool is closed for his training. This makes his grueling operation even more of a success.

About Craniosynostosis

Craniosynostosis is a rare condition. Normally, cranial sutures (gaps) in babies’ skulls allow the skull to grow as the brain expands. When they close either prior to or shortly after the baby is born (craniosynostosis), the skull’s growth is restricted in that area while the other area forms an overgrowth. The result is that the baby’s head is oddly shaped.

The cause of the disorder is still a mystery, but boys have triple the risk of developing the disorder compared to girls.

 Looking Forward

Victoria is extremely grateful that the operation was a success, and that Daniel was able to have a normal childhood.