Special feature: Mum’s advice to parents after her son’s condition was missed

Amy and Lee Martin with their children Jessica and Jacob
Amy and Lee Martin with their children Jessica and Jacob

A mum’s intuition and a feeling that “things were not right” has ensured that her young son got an early diagnosis of a condition that could hinder the growth of his brain and learning development.

Amy and Lee Martin’s son Jacob was born at University Hospital Coventry with craniosynostosis, which is where the skull bone has fused together.

Jessica and Jacob

Jessica and Jacob

If not treated, things a child can suffer from include persistent headaches, learning difficulties and eye problems.

Jacob, now aged three months, will have to undergo an operation lasting up to five hours, where the top of his head will be cut open – from ear to ear – enabling medical staff to open up his skull.

And it was a condition that Amy, a nurse at a specialist children’s centre in Coventry, had never heard of.

Now the couple, who live in Bilton, are urging other parents to challenge medical staff if they think their new-born has a similar condition and they feel paediatricians and midwives don’t take it into consideration.

Amy said: “I want to raise awareness of this rare condition and that abnormal is not normal.

“The day after the birth it was noticed that instead of being rounded, Jacob’s head had a slight point, like a bullet.

“We were told his head was fine and that babies are born with different shapes and over time the head forms into a more rounded shape.

“But it was increasing in size dramatically over four weeks. His head was measured by a health visitor on one visit and the measurement shot off the scale – Jacob’s head was about 60 per cent bigger than it should have been.”

By then Amy and her husband, who runs the Lee Martin Driving School, had become increasingly concerned about their son’s welfare.

“It was just the constant niggle for both of us that things were not right. From day one at home Jacob’s head seemed out of proportion and he would not lie with his head flat while on his back because the ridge was so pronounced.

“And family members who were not seeing him every day would notice that Jacob’s head was getting bigger.”

Seeking a second opinion, they took Jacob to their GP, who thought it might be water on the brain, a potentially lethal condition.

The GP arranged a CT scan at University Hospital Coventry and pressure by Jacob’s parents ensured it was brought forward.

The couple then faced an anxious wait while the scan was studied that day by experts at Birmingham Children’s Hospital and craniosynostosis was diagnosed.

Amy said: “I was relieved it was not water on the brain, but then worried what Jacob would have to go through to put it right. “Since it was diagnosed I have had nothing but help and support from medical staff and health visitors. It’s at times like this that you appreciate the real value of the NHS.”

The operation will be in October at Birmingham Children’s Hospital and Jacob will have to go to there for regular checks until he is aged 10.

Back at home and assured that Jacob will not have developmental or facial problems, the couple’s daughter Jessica, aged seven, is getting used to her little brother.

Amy said: “We’ve told Jess about it. She’s protective of him anyway. Jess gives him cuddles but is aware that his head is delicate.”

And Amy’s advice to parents is: “If a child’s head is an abnormal shape don’t have your concerns pacified by people saying it’s normal. Once again, abnormal is not normal.

“Go by your gut instinct and don’t be afraid to insist that things are not right and raise your concerns with medical staff. Mum always knows best.”