Baby boy’s ‘boat shaped’ head was sign of life threatening condition


A baby born with a potentially life threatening condition needed surgery to fix his “boat shaped” head.

When baby Jace was born examinations found he had no soft spot on his head and a protruding lump at the back. At first doctors were unsure what the problem was but after being transferred to Alder Hey Children’s Hospital a scan revealed Jace had sagittal craniosynostosis – a condition which can cause problems with brain and skull growth and can leave the skull in a ‘boat shape’.

Mum Toni Smith-Pickles said after the scan the family were given the option of having the surgery when Jace was 18-weeks-old or 18-months-old. But due to the risks of leaving the condition for too long the family decided to get the surgery done as soon as possible and Jace went in for a major operation in 2019, at four months old.

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Toni told the ECHO she was “sick with worry” before the surgery but she shouldn’t have worried as Jace only spent two days in intensive care before the family could return home. The 29-year-old from Bolton said: “Jace’s head had quite a big bump so when he lay on his back he couldn’t lie and look at the sky – we had to buy him a special pillow with a hole in the middle.

“We could never put him in his car seat either as his head would just rock onto his chest and he would start to go blue because it blocked his airwaves. Days before the surgery I was so nervous – I made myself sick with worry.

“The doctors told me not to read up about the surgery but I was watching YouTube videos about it. We needed to do it though because of the risks of the pressure in Jace’s skull.”

Jace was operated on at Alder Hey weeks later where surgeons removed the fused bone in his head. Worried about leaving her other three children – who she had never left before – Toni, her husband and all the children stayed in the Ronald McDonald House while Jace remained in the intensive care unit.

Jace is now three-years-old and has experienced no issues since the surgery
Jace is now three-years-old and has experienced no issues since the surgery

But after just two days the family were able to return home with Jace wearing a protective helmet. Toni told the ECHO the staff at the children’s hospital were “absolutely brilliant because they kept our family together which made me feel a lot better about everything”.

Jace is now three-years-old and has recovered well from the surgery. He has a large scar on the back of his head from the operation but Toni said because his hair is so fair it’s hard to notice.

He has to have a check up every two years so consultants can monitor his progress as the operation can sometimes cause slow speech development. But Toni said Jace’s recent check up in April went really well and he’s living just like a three-year-old should.

Toni said: “We still have to be careful if he bangs his head but no more careful than anyone else. Doctors have told us just to treat him like a normal little boy.

“He loves going to football club and he’s always running around and climbing on everything. He never stops.”