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Parents heartbroken after 'happy and smiley' baby boy dies from rare condition


Parents heartbroken after 'happy and smiley' baby boy dies from rare condition

Grieving parents have paid tribute to their "happy and smiley" five-month-old boy who died just weeks after undergoing surgery for a rare heart condition.

Weeks before his birth, parents Rhys Bevan and Georgia Claxton, from Rainham, were told their baby George would not have long to live.

Georgia said: "We were told that once he was born, he would need intervention straight away.

"I had to have a C-section, and there were around 20 people in the room because they needed to prepare for any procedure that he might have needed."

When he was born on April 29, George was given a cardiac catheterisation - a procedure used to diagnose and treat heart conditions.

He spent around eight days at the Paediatric Intensive Care Unit (PICU) at St Thomas' Hospital in London, before undergoing his first open heart surgery.

George had Hypoplastic left heart syndrome (HLHS), a condition where the left side of the heart is severely underdeveloped.

Mum Georgia explained: "Basically, half of his heart didn't work. He spent the first month of his life in the hospital.

"We got discharged on May 29, and when he came home, he was on a home monitoring scheme where we would do all his observations at home and send them to the hospital every day.

"His oxygen levels were a lot lower than normal, and we also had to weigh him every day because he had to hit a certain weight to have his next surgery.

"We were going to the hospital every other week, sometimes every week if his readings weren't quite right."

On September 10, George had his second open-heart surgery after a routine echocardiogram picked up on the narrowing of his aortic arch.

Georgia says that, straight after the operation, his oxygen levels were still a lot lower than they were supposed to be, but that after a few days, he "all of a sudden got better".

She explained: "He came home within six days, and from that point, we didn't have to do the home monitoring anymore.

"We were kind of told that we could start behaving a bit normally from then onwards."

But on September 29, the parents said they had noticed their son "didn't seem right" and took him to Medway Maritime Hospital in Gillingham.

Georgia, 29, said: "His colour was wrong and he was laboured with his breathing. Throughout the day his pulse went down and down until the point where he died."

Rhys added: "The surgery was meant to improve his outlook and give us some kind of normality for a couple of years until a final surgery, but tragically, at exactly five months old, we lost him.

"Within the space of eight hours, he deteriorated quickly and passed away in our arms."

The couple, who also have a nine-year-old and three-year-old, have set up a fundraiser to cover funeral costs and to buy a headstone - to give George "the send off he deserves". Donations can be made here.

Georgia says her son was "such a happy baby", adding: "You'd never have known he had gone through so much, he was always so happy and smiley.

"He was quite delayed in his development because of all the time in the hospital, we had just heard his first giggle the week before he died."

Rhys, 29, said: "Our little baby was with us for five months and in that short time brought us so many wonderful and happy memories."

His parents have now up a fundraiser to give him "the send-off he deserves".

"Throughout everything he always kept smiling and was a content little soul," Rhys added.

"We'd love to be able to give George the send-off he deserves and be able to celebrate his life with his older brother and sister, along with the many people who supported him on his journey.

"Any money raised will go towards just that so we'd be so grateful for any help."

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