My nephew, River was born 20th November 2023 via planned c-section. In all his scans River was a happy and a healthy baby with no problems.

On the day River was born, the doctors came to do their checks and my sister mentioned that she was concerned about the shape and size of rivers head. This was then checked and her concerns were noted as they then took him for an xray.

River was then referred to Birmingham Hospital as they were under the impression he had something called Craniosynostosis.

Craniosynostosis is a condition in which the sutures close too early, causing problems with normal brain and skull growth. Premature closure of the sutures may also cause pressure inside the head to increase and the skull or facial bones to change from a normal, symmetrical appearance. A child with craniosynostosis requires frequent medical evaluations to ensure that the skull, facial bones, jaw alignment and brain are developing normally throughout their childhood and adolescence.

After multiple appointments with staff from BCH we got a diagnosis that River was confirmed to have 3 types of Crainio, these are metopic synostosis, Sagittal synostosis & BiLambdoid synostosis.

We were aware of certain complications, the biggest one would be his brain pushing upwards and reshaping his skull. Unfortunately this has not happened, his brain is now pushing down into his spinal column.

They were originally wanting to operate on River when he was 18 months - 2 years old but due to the results of his MRI and CT scans they decided it would be better act faster as prevention is better than cure and this would no longer be a cosmetic procedure but needed to be done for function purposes in the future. We were told they would be operating in the next 2 months.

River is now due to have his operation on the 3rd September and will be back and forth to BCH until his late teens to monitor his brain and development.

On 1st September River will be having his first hair cut at home as Bethany does not want them shaving him in theatre and that being his “first”.

Rivers operations currently has no plan, as they need to “open him up” to determine what exactly needs to be done. What we do know is that the operation will be around 6 hours long.

From our research we think River will be having Calvarial Vault Remodeling.

In this procedure, the surgeon makes an incision in the infant’s scalp and corrects the shape of the head by cracking and moving the area of the skull that is abnormally or prematurely fused, and then reshapes the skull so it can take more of a round contour. Surgery can last up to six hours. River will likely spend one night in the intensive care unit, plus an additional few days in the hospital for monitoring. This surgery may commonly involve a blood transfusion. After surgery, there may be temporary facial swelling.

We want to raise money for BCH & for Bethany to cover all expenses while River is in hospital.

Please support River and show him how strong he is by donating to his Brave the Shave 🪒

Thank you for reading our story.

Sharna - Rivers Aunty