Friday, 3 November 2017


Isaac's operation would change the way he looked forever and the charity Headlines had the tools his parents needed to prepare his siblings and themselves for this inevitable outcome.

Isaac was diagnosed with metopic synostosis shortly before his first birthday. He had been referred to see a doctor because he was growing more quickly than expected for his age. The doctor was unconcerned with his size. However, he was surprised by the shape of Isaac's head and referred him to a specialist at The John Radcliffe Hospital.

Rachel and John are Isaac's parents and both have a rare combination of personality traits. They are calm and relaxed but super efficient at the same time. Rachel was planning to take Isaac to the appointment by herself but from the moment she walked into the consultant's room, she was grateful that her mum had insisted on accompanying her. Alongside the consultant were 7 other specialists taking notes and ready to offer their opinions on Isaac's condition.

What is Metopic Synostosis?

  • The metopic suture­—the joint that runs from the baby’s fontanel (the “soft spot” at the top of the head) down the forehead to the top of his/her nose­—closes too early.
  • The baby develops a noticeable ridge extending along the center of the forehead.
  • The forehead will look overly narrow.
  • His/her eyes may be spaced too closely together.
  • The front of the skull may appear pointed and rather “triangular.”

Some children have very mild cases of metopic synostosis that do not require specific treatment. In more serious cases, however, the condition can cause:

  • developmental delays
  • learning and behavioral problems
  • vision problems

Isaac was sent for a CT scan to ascertain if an operation would be needed. If his brain was in a healthy, round shape and had room to grow, an operation would not be necessary. However, Isaac's brain was already being pulled out of shape. The consultant left Rachel and John to make the final decision about surgery but advised them that he would have opted for the operation if Isaac had been his child. The best time to operate for the condition is between the ages of 9 and 18 months as by the age of 2 years old, the head is 80% fully grown. Isaac braved the operation at 15 months.


A specialist nurse was assigned to the family and she introduced them to Headlines.

Headlines is a charitable organisation based in the UK which aims to provide support and help to all those affected by Craniosynostosis and associated conditions. Craniosynostosis is evident when one or more of the plates in the skull fuses, normally before birth, resulting in problems often requiring surgical intervention at a young age. Some conditions require ongoing surgical as well as other medical treatments into early adulthood.

Craniosynostosis affects 1 in 2000 births and up to 350 children are born with this condition in the UK every year.

Through Headlines, the nurse was able to offer support to Rachel, John and Isaac's 3 older siblings. She gave the children a special storybook which explained to them in age-appropriate language that Isaac would go down to theatre looking one way and come back looking very different. As the family faced sending their young son into theatre for major surgery to his head, this specialist nurse was a reassuring and comforting voice of experience.

The surgery was successful and the doctors are confident that Isaac will not need any further intervention. Rachel and John are well aware that this is not the case for all families and some children have to endure several rounds of surgery to address the problem. If the condition is not identified early enough, the damage caused can be irreversible.

For Isaac, the ordeal is over but for many others it is just beginning. This is why Headlines is on the list of the fortycubed charities and why I will be fundraising for Headlines over the coming year. If you would like to make a donation to support other families going through similar situations please do so via this link.

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