Liam's craniofacial story

When Liam Baxter was born, his parents thought he was perfect.

He had quite a prominent forehead but the midwife said that was due to the way he had been lying before his birth.

"I accepted that and never questioned it again," says his mum, Lisa, who is a teaching assistant from Alnwick in Northumberland.

Liam's Dad, Phil, a painter and decorator, agrees. "We did call him Liam-with-his-funny-head, but we didn't think anything was wrong. He was perfect to us," says Lisa.

Eight weeks later, when Lisa took Liam for his routine vaccinations, his GP was concerned - but it was only when Liam was referred to Birmingham Children's Hospital that the reality hit.

"We assumed we'd go to our local hospital in Newcastle. When they sent us to Birmingham, I was quite shocked," says Lisa.

"I felt defensive of his head. I thought people were staring at him, but they probably weren't."

In Birmingham, five-month-old Liam was diagnosed with sagittal craniosynostosis, a condition in which the bones of the skull fuse together too early. This can mean the brain does not have enough space to grow and can lead to brain damage if not treated.

"Thanks goodness it was picked up," says Lisa. "I dread to think what might have happened if it hadn't been noticed."

Liam had to have more tests and scans, but the hospital arranged for those to be done in Newcastle to avoid unnecessary journeys to Birmingham.

When he was six months old, Liam had his operation.

"We went to Ward 10 the day before," says Lisa. "I stayed in a fold-up bed beside him."

Liam was happy. He was laughing when he was getting ready for his operation. Lisa was shaking and her legs felt like jelly.

"The operation lasted for four-and-a-half hours," she recalls. "They were the longest four-and-a-half hours of my life. You have to decide whether to stay in the hospital or go out. I felt I would go mad if I stayed in the hospital. I went round Birmingham with my mum."

When Lisa first saw Liam after operation, she felt shocked all over again.

"I expected him to have a bandage on his head but I wasn't prepared for the rest. I don’t think you can be."

Liam had a tube going into his neck, to give him medicine, a tube coming out of his body, to drain him of fluids, and he was on a machine that was beeping constantly.

"We had thought he would be sleeping all the time after his operation, but he wasn't."

The worse thing was that he didn't look like Liam anymore.

"To us he was perfect before and we didn't want to change him. His head was so different after the operation. It was like having a new Liam. I had to get used to him."

Liam, who is now aged two, recovered well. The day after the operation he said his first word: "Dada." Very soon he was sitting up and crawling, which he had not done before.

But it took Lisa about a year to get over the experience.

"When we got home and saw all the pictures of him before, I almost had to mourn," she says. "I became paranoid. Whenever he got a cold or an ear infection, I feared he would have to go into hospital again."

Those feelings changed with time.

"I'd like mums and dads to know that it really does get better. Now I can just get on with enjoying Liam."

He will go to Birmingham Children's Hospital for a check-up each year until he is five. If all is well then he won't have to go back again.

"The hospital was brilliant. I couldn't fault them at all. They made us very welcome," says Lisa. "I thank the craniofacial team every day for what they have done for Liam.

"And Liam was amazing. He's my little inspiration. Whenever I've got to do something that's not very nice – like go to the dentist – I think about Liam and I think: 'If Liam can go through that, then I can do it'.

"He always was such a lovely little boy but I think the operation's made him who he is today."

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