'My son's head size led to rare vein diagnosis'

Conor's mum Lucy says doctors at Alder Hey "saved" all the family

"The consultant was looking at his belly button, and then suddenly wanted to ask me questions about his head."

A mother has described how a doctor noticed her son's "pronounced forehead" during an unrelated appointment which led to his rare diagnosis.

Conor, now three, was diagnosed with vein of galen malformation (VOGM) - where brain vessels connect abnormally - which affects only about 10 to 12 babies in the UK each year and can lead to serious complications if undetected.

He was treated with a new surgical technique at Alder Hey Children's Hospital in Liverpool in March, which involved open surgery.

"Thank you just doesn't cut it," his mum, Lucy, from Bolton, said. "They not only saved his life, they saved ours too."

She said she had initially felt "slightly confused" when the doctor started asking about Conor's head, after going in to check on a potential umbilical hernia.

"He felt like he had quite a pronounced forehead; it was quite a large head," she said.

"And he had very visible veins on his forehead, and his temples, around his eyes."

She said an MRI scan showed eight-month-old Conor had a "significant brain issue" that would require surgery.

"It was only after those scans that they said to us that they think that it's vein of galen malformation and then started to explain to us a little bit what that meant," Lucy said.

"But in reality, they'd never seen it before in Bolton."

She said the experience was "terrifying" and the couple felt "helpless" and what followed felt like "a bit of an out of body experience".

Conor hugs his surgeon Conor Mallucci, who was part of the operating team

Conor went on to have three operations at Alder Hey.

However, he was one of a rare group of patients where veins block off and doctors could no longer get to the malformation.

It was causing swelling and damage to the brain stem and spinal cord, leading him to deteriorate, according to his surgeon Conor Mallucci.

He said: "It's a fight against time, and that happened quite early in Conor, which is why we had to come up with this alternative route."

A new surgical technique was used involving access through Conor's skull to target the affected blood vessels.

Conor and his parents with some of the medics who treated him

Alder Hey is one of only two centres in the UK equipped to carry out this procedure on children.

The hospital has a state-of-the-art theatre with advanced imaging machinery, giving specialists real-time X-ray pictures of blood vessels during operations and allowing them to combine endovascular and open surgery.

The technique has never been performed at another hospital.

Mr Mallucci said: "Exposing these veins that were blocked at the jugular level is high risk.

"You lose blood. It's a big operation, and to put a needle directly into one of those is a little bit hair raising, so we had to be very careful about that."

Conor was expected to sleep for about a week after the operation and stay in hospital for six weeks, but he woke up soon after and asked his mum for chips.

"I obviously went into mum mode and said 'can we get some chips in here please?," Lucy said.

He left the hospital 10 days later.

Now aged three, Conor recovered well and is now considered "99% cured" by Mr Mallucci.

He has left nursery and will be attending pre-school in September.

Conor is set to attend pre-school in September

Lucy said: "As much as I feel like this is an incredibly unlucky diagnosis, I sometimes have to pull that back and think actually we were incredibly lucky in a lot of ways."

She said she was "so proud" of her "resilient" son, adding: "At one point they were saying, 'we may want to hold him back' and 'maybe it might be a bit too much for him'.

"But they've said now that they think he's doing incredibly well."