AT LESS than a year old, Zac Eynon and Lucas Ford are already veterans of major surgery to correct a rare skull condition.

In operations lasting several hours - and just a month apart - teams of experts at Birmingham's Children's Hospital took apart their skulls and remodelled them, before putting them back together.

Both bear the ear-to-ear zigzag scar typical of the aftermath of surgery to correct sagittal craniosynostosis, caused when seams in the skull, known as 'sutures', fuse when the baby is in the womb.

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Zac Eynon (left) and Lucas Ford after their operations. Picture - Mark Lewis

These sutures do not usually fuse completely until a few years old, and the consequences of premature fusing can include a misshapen skull, raised pressure inside the skull, and developmental problems. It can also affect how the brain grows.

But with the corrective surgery that the boys have undergone, the outlook is good and they are on course to live normal lives.

Zac and Lucas's parents had never heard of craniosynostosis, and are telling their stories to help raise awareness.

Zac's mum Steff Eynon said the first thing she noticed was a ridge on top of his head when he was two weeks old.

"We have a five-year-old too, and could not remember this with him," said Mrs Eynon, who lives in Cwmbran with husband Will, and Zac and his older brother Alex.

"I raised it with the midwife and she explained that this sort of thing can happen at birth, with babies having to go through the birth canal, and that it would flatten after the few weeks.

"At his six-week check, the GP said it was normal too, and then we saw the health visitor who told me the same thing as the midwife.


"At nine weeks the ridge was still there, and we didn't feel it was right. Then I took him to he baby clinic, where he was weighed. By this stage I thought it was normal, but it was a different health visitor, so I thought I would mention it again.

"She booked a doctor's appointment for us, and it was a different doctor to the one at the six-week check. She mentioned his forehead being pronounced. I hadn't noticed this before.

"She booked us in to see a paediatrician at the Royal Gwent Hospital, and I got a call an hour later asking if we could be at the hospital the next day at 10am, and to pack a bag as we were going to be there all day.

"At the hospital it felt like they asked a million questions. His head was quite long but I thought that it was just what he looked like.

"They did a CT scan - they didn't have to sedate him, thank God - that was hard because I think I was in denial, because I had been told it was normal.

"We got the result the next day. They explained what was going on with his skull, and said he may need surgery to correct it.

"I completely broke down. He was nine weeks old, and it is quite rare to have this diagnosis that early."

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Zac with mum Steff and dad Will

An urgent referral was made for Zac to Birmingham Children's Hospital, one of just four specialist NHS centre for craniosynostosis, and in May he had his first appointment.

"We didn't know how it would affect him in the future before that. I was frightened, but we had prepared ourselves for them to say he needed an operation," said Mrs Eynon.

"It was hard, reading everything about craniosynostosis, but we found Cranio Ribbons (a support and awareness group - and they and Cranio Ribbons Ireland have been a massive help to us.

"It was clear at the first appointment that he needed surgery, but having read about it, we were ready. There was pressure on his brain, but we were expecting that."

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Zac in hospital after his operation

Zac, then aged nine months, had his operation on Tuesday October 15 and made such a good recovery that he was home the following weekend.

In September, Lucas Ford, from Newport, who is a month older than Zac, also had surgery at Birmingham to correct sagittal craniosynostosis.

Like Mrs Eynon, his mum Isabelle Ford had never heard of the condition.

"There were regular health visitor appointments. Lucas's head was quite large, and the health visitor said she just wanted the doctor to have a look at it.

"It was a mild case. The doctor referred us to the Serennu Centre (in High Cross), then he had an x-ray, then a CT scan, and it was confirmed. At the appointment in Birmingham, it was decided that he needed surgery.

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Lucas Ford with his mum Isabelle

"Steff and I found each other on Facebook. It's been great to be able to speak to someone else in the same position.

"The things we were saying to each other about the boys and what was happening, we were able to say "I know exactly how you feel", and support each other."

Sagittal craniosynostosis, which Zac and Lucas were born with, is the most common form the condition, which are named based on which sutures have prematurely fused.

The cause of sagittal craniosynostosis remains unknown. There may be a genetic link, but the gene has not been identified, and more research is needed.

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Zac before and after his operation

"Whilst we all want to trust the professionals, sometimes you have to remember that they don't know about everything," said Mrs Eynon.

"You know your child best, and if something is bothering you, keep asking the questions. Eventually you will speak to somebody who understands your concerns and helps you get the right answers.

"Trust your instincts, abnormal isn't always normal. I hope that telling Zac's and Lucas's stories will spread awareness.

"If you are going through something like this, there is light at the end of the tunnel.

"Reach out, and don't be afraid to ask any questions, no matter how silly you may think they are."