Sam's special 'first'

There are many ‘firsts’ in a baby’s life – their first bath, first smile, first steps and first words.

One-year-old Sam will have a unique ‘first’ to remember looking back on his first year of life, as the first baby in Australia to undergo a strip minimal access endoscopic craniectomy and cranial orthosis (or helmet therapy).

When Sam was born, his parents, Kris and Frank, noticed the shape of his head was unusually long from front to back. After visiting their local GP, Sam was diagnosed with sagittal craniosynostosis – a condition caused by sutures in the skull fusing too early as a newborn develops, which can restrict brain growth and result in an abnormal head shape.

Sam was referred to Sydney Children’s Hospital, Randwick (SCH), where his parents Kris and Frank were introduced to Paediatric Craniofacial Surgeon, Professor Chris Forrest, and the Craniofacial team.

Former Head of the Division of Plastic Reconstructive Surgery at Sick Kids Toronto and Former Chair of the Division of Plastic, Reconstructive & Aesthetic Surgery at the University of Toronto, Prof. Forrest is an internationally recognised expert in paediatric craniofacial conditions. He recently joined the Network to lead the Craniofacial Service.

Prof. Forrest told Sam’s parents the best treatment option for Sam was a strip craniectomy and cranial orthosis – a game-changing procedure that was yet to be performed in Australia.

Since joining the Network, Prof. Forrest has introduced this minimally invasive procedure - one that has been offered by his team at Sick Kids in recent years for children born with craniosynostosis. The strip craniectomy and cranial orthosis involves an operation where small incisions are made in the scalp. Using an endoscope, a strip of bone is removed from the skull and a new suture is created. In subsequent months, as the brain grows from the inside, a moulding helmet is used to help control the shape of the head from the outside.

This option was recommended to Sam’s family to provide early intervention for his condition, to improve his head shape and allow his brain sufficient space to expand while his skull grew, without risk of too much pressure.

Sam was the first patient in Australia that underwent a minimal access endoscopic strip craniectomy. His surgery was performed by Prof. Forrest, Dr Mitchell and the Craniofacial team when he was just three months old. The procedure went well and within 24 hours, Sam was back to feeling like himself.

“This combination of surgery and moulding helmet therapy has produced very successful results, and we’ve seen many families like Sam’s, very happy with the outcomes and fast recovery. It is a much less invasive option than the incision made in the head in the traditional (open) surgery,” said Prof. Forrest.

“Knowing Sam would be the first child in Australia to undergo this procedure was quite nerve-wracking initially, but we are so grateful he was able to benefit from Prof Forrest and the Craniofacial team’s expertise, and that this specialised surgery was available in NSW,” said Kris.

“We were shocked by how quickly Sam bounced back. He had a big smile on his face just one day after surgery and was ready to be discharged after two nights in hospital.”

While it can be daunting for families to be the very ‘first’ to undergo any new surgery or treatment option, Frank said the Craniofacial team at SCH put he and Kris at ease.

“Our care felt extremely personalised, and as scary as the process was at the time, the way the team got behind us gave us confidence and peace of mind,” Frank said.

“Dr Forrest and Dr Mitchell were both amazing at allaying our concerns and made themselves available to answer any questions we had. Sam’s Clinical Nurse Consultant, Dani, also took us on a tour of the hospital in the lead-up to the surgery, explaining what to expect step by step.”

Following his surgery, Sam was fitted with a custom-made helmet. For several months, the helmet has been regularly adjusted to help reshape the skull and mould Sam’s head to a shape allowing for normal brain growth.

Within just 10 days of surgery, Sam’s head shape had improved so drastically that he needed a second helmet to be made. Now 12 months old, Sam has had his helmet removed altogether.

“Sam’s orthotist, Roger Dart, has also been incredibly helpful throughout this process. We’ve seen him almost monthly for helmet adjustments, and he’s played a big part in our journey,” Frank said.

“We are so happy to see how far Sam has come. You would never know that he has had the surgery. His scars have healed extremely well, and his head shape has rounded nicely. We are so grateful for everything his team have done to support his treatment and recovery.”

*Some names have been changed to protect privacy.