When Jackson and Reuben were born in September 2022, Central Coast mothers Kayla and Hayley had no idea the special bond they would soon form.

In the early weeks of Jackson and Reuben’s lives, they were both diagnosed with sagittal craniosynostosis, a condition affecting about 1 in 2,500 babies where the fibrous connections between the bones of the skull, also known as sutures, fuse together prematurely. If left untreated, this can lead to issues with the brain and skull growth.

Jackson and Reuben both needed surgery to ensure their brains could grow healthily without being damaged by the lack of space, and were referred to The Children’s Hospital at Westmead (CHW).

During their initial consultation with the Craniofacial team, Jackson’s mum, Kayla, and Reuben’s mum, Hayley, were told the best treatment option was an Australian-first surgery called a strip craniectomy.

The surgery was introduced at Sydney Children’s Hospitals Network under the leadership of renowned paediatric plastic surgeon, Professor Chris Forrest, who is the former head of the Division of Plastic Reconstructive Surgery at The Hospital for Sick Children (SickKids) Toronto, and has recently joined the Network to lead the Craniofacial Service.

The minimally invasive surgery involves making two small incisions in a baby’s head and removing the fused sutures endoscopically, making room for brain to grow and avoiding the need for open surgery.  Babies then wear a helmet for the next six to nine months to help reshape their skull.

“The surgery helps reduce pressure on the brain for these young babies, is minimally invasive and requires a shorter operating time and length of hospital stay, helping get children home and into the next stage of their recovery sooner,” said Prof. Forrest.

“I think this is a great opportunity for families to have a smaller operation with less risk of transfusion, and to provide care for their children at a much earlier age with a dramatic improvement to their head shape. The combination of this surgery and molding helmet therapy produces very successful results.”

While Hayley and Kayla hadn’t heard of sagittal craniosynostosis or strip craniectomy prior to their sons receiving the diagnosis, they said everyone they met along the way quickly helped to educate them and empower them in their child’s journey.

“From the moment we spoke with the Craniofacial Secretary, Helen, we knew we had made the right decision to have Reuben's surgery at The Children’s Hospital at Westmead,” Hayley said. 

“The communication we have had from the Clinic Nurse Consultant, Nicole in our very first consult to ensure we understood the next steps, and our experience with the whole team involved in Jackson’s care who made us feel completely comfortable and confident in the procedure he was having, made a world of difference and we can’t thank the Craniofacial team enough for the care we received,” Kayla said.

In a heartwarming twist of fate, Jackson and Reuben were booked in for their surgeries on the very same day – 13 January 2023, and both had successful surgeries taking less than three hours.

After a short stay in hospital for post-surgery monitoring, Jackson and Reuben were both discharged to their Central Coast homes with their families, ready to begin the next stage of their recovery.

“We are so grateful that Reuben was able to have a minimally invasive surgery at such a young age and be discharged home after 24 hours without complications,” Hayley said.

“The care that has been provided to Reuben and us by the entire Craniofacial team has made the process less traumatic. It meant we could get back to our other kids and help him recover from the comfort of home, and that this is now just a small hiccup in his life.”

Kayla added, “We look at it as a life-changing procedure not only for Jackson, but for our whole family, molding the shape of our little boy’s head to provide the space for his brain growth.”

Upon returning home, Kayla and Hayley were connected through a mutual friend who picked up on the unlikely similarities in their circumstances, and the mothers have since formed a close bond, sharing their experiences, providing reassurance and being a huge emotional support to each other.

“Having Hayley to communicate with throughout the process has been so helpful. It’s so nice having someone else on the journey alongside us.  From asking 101 questions to each other to just having a shoulder to lean on, it has made the whole process a lot less stressful,” Kayla said.

“When going through a challenging time family and friends may sympathise, but having someone to talk to who is going through a similar journey to yours and understands the ins and outs has been invaluable,” Hayley said.

Reuben and Jackson have now begun their next stage of treatment, cranial orthosis, and have been fitted with their special helmets to help shape their skulls.

As Hayley and Kayla support their now 10-month-old boys through this process, they are grateful for the surgery that has helped their little boys grow into happy babies and become the most special of friends.

“Reuben is now such a happy and chilled little boy and he is thriving. Since the day he got his helmet, he has never been bothered by it, in fact he loves the added attention it attracts,” Hayley said.

“Jackson is recovering perfectly - the surgery was so effective, and he is always showing off his big smile to anyone who is happy to look in his direction. Of course, this includes Reuben who has become such a special friend for him,” Kayla said.

Reuben and Jackson are due to have their helmets removed later this year and with no further surgery needed, they will be well and truly ready to tackle the world.

Prof Forrest said it was a true gift to work with the multidisciplinary teams across the Network and provide this life-changing care to patients like Jackson and Reuben.

“It’s been an honour to be part of the community here at SCHN and work with the nurses, anaesthetists, orthotists, neurosurgeons, and the entire craniofacial team to establish this approach as an early intervention for young babies with craniosynostosis who come to our hospitals for care,” Prof Forrest said.

“Children are remarkable human beings, and being able to do something when they’re very young that’s going to influence the rest of their lives is incredible.”

Prof. Forrest and the Craniofacial teams at our Network are now collaborating with other paediatric craniofacial units across Australia and New Zealand in the hope of expanding this intervention and pushing the boundaries of the field to improve outcomes for more children like Jackson and Reuben.

The expansion of the Craniofacial Service is being supported by Sydney Children's Hospitals Foundation.