Saffron Walden mother speaks out about son’s rare skull condition in hope of helping others

PUBLISHED: 14:44 17 September 2017 | UPDATED: 14:44 17 September 2017

Alex Pilling with his mother Laura and sister Eva at home in Saffron Walden. Picture: SAFFRON PHOTO

Alex Pilling with his mother Laura and sister Eva at home in Saffron Walden. Picture: SAFFRON PHOTO

Saffron Photo 2017

A mother-of-two from Saffron Walden is hoping to spread the word about a rare condition after her son underwent major surgery to reshape his skull.

Alex was born with a rare skull conditionr, but it is not known how he got it. Picture: LAURA PILLINGAlex was born with a rare skull conditionr, but it is not known how he got it. Picture: LAURA PILLING

Laura Pilling lives with her husband James and children Eva, four, and two-year-old Alex.

Despite a normal pregnancy, soon after Alex arrived she noticed something was wrong.

“When he was born I thought his skull wasn’t right,” Laura told The Saffron Walden Reporter.

“I said to the midwives at the time his skull seems really lumpy. They said they’re all born with lumpy heads and it will settle down. He had a very pronounced forehead as well and people were saying it was birth trauma, but I didn’t think it was because he was a c-section.

Alex's condition meant that parts of his skull had fused and disrupted his head's growth. Picture: LAURA PILLINGAlex's condition meant that parts of his skull had fused and disrupted his head's growth. Picture: LAURA PILLING

“As time went on, the pronounced forehead didn’t really settle down and his head was very long and thin and I noticed he always had his head on one side and he could never lie on his back and seemed to always be tipping off it.”

The family were living in Manchester at the time, and Laura also noticed Alex had a ridge down the centre of his skull.

A midwife soon agreed it was unusual and Laura started researching.

“I got onto Google and I came up with this condition called craniosynostosis. He looked like the children in these pictures and he had temporal hollowing, where the temples are pinched and it gives a bulbous look to the forehead.”

Alex Pilling with his mother Laura and sister Eva at home in Saffron Walden. Picture: SAFFRON PHOTOAlex Pilling with his mother Laura and sister Eva at home in Saffron Walden. Picture: SAFFRON PHOTO

After seeing a doctor and being referred to hospital, the diagnosis was confirmed.

The condition is the result of the premature fusion of different sections of the skull, and means it is unable to grow in affected areas.

Other areas may then ‘overgrow’ to compensate, affecting the pressure in the head.

At just five months old, Alex underwent spring surgery to correct his head.

LIttle Alex Pilling before he underwent surgery for his rare skull condition. Picture: LAURA PILLINGLIttle Alex Pilling before he underwent surgery for his rare skull condition. Picture: LAURA PILLING

A cut is made and metal springs inserted, which encourages new bone to grow between the gap.

At 15 months Alex had his final operation to remove the springs and remodel his forehead.

“They took off the front of his skull, turned it upside down and shaved bits off. It looks significantly better than it did,” Laura said.

“He didn’t like the nurses whenever they came in because he knew they’d be giving him injections.

Alex following surgery on his head at Great Ormond Street Hospital. Picture: LAURA PILLINGAlex following surgery on his head at Great Ormond Street Hospital. Picture: LAURA PILLING

“He came out and was quite poorly and was on the edge of needing a blood transfusion, but within 10 days he was sliding head first down slides. I had my heart in my throat but he was absolutely fine and bounced back.”

She added: “I felt guilty because you think, gosh, they’re so innocent and then you have to hand them to the surgeon. That was the worst thing for me.

“You have to lie your baby on the bed and hold them while they give them gas and go to sleep. That was the most heart-wrenching moment. The surgeons were absolute heroes and did such a beautiful job and looked after him.”

According to the NHS, craniosynostosis affects an estimated 1 in every 1,800 to 3,000 children.

There are two types – nonsyndromic, which is what Alex had, where there are no other birth defects and the cause is unknown, and syndromic, where it is the result of several rare syndromes.

Following her son’s experience, Laura now wants others to become more aware of the condition, which could, if left untreated, cause blindness.

“There needs to be more awareness of it within the healthcare profession. I’ve heard many stories where the doctors haven’t known what it is. If they’re not sure what it is maybe they should have the confidence to refer it.

“I’ve heard a lot of people were told it will get better with time and that’s not always the case.”

She added: “Abnormal is not always normal and if you’re concerned about head shape don’t be afraid to ask and if you’re concerned, push for it. If you’re concerned, act on it.”

Alex is now checked once a year by doctors and has regular eye appointments.

“He likes cuddles and he’s just a normal little boy,” Laura said.

“He seems totally unaffected by this and was very lucky to have had the surgery that he did, and to have been referred as quickly as he was, so credit to the doctors for doing that.”

September is also Craniosynostosis Awareness Month, with a purple ribbon the symbol of support.

For more information, visit craniosynostosisawareness.co.uk or search Cranio Ribbons on Facebook.

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