Crawley family devastated after son born with rare heart tumour requiring 140,000 surgery in Boston – Sussex Live

A family living in Crawley have been faced with the desperate challenge of raising 140,000 to get their baby son potentially life-saving surgery. Rafael Silva and Lina Griciute thought that everything was going to plan when their third child Gabriel was born in May last year.

However, shortly after his birth, the nurses realised Gabriel was short of breath and he was quickly rushed to intensive care. It was discovered that his heart was enlarged and further tests at Evelina Hospital, London, diagnosed him with a cardiac fibroma, a rare heart tumour.

Whilst the prognosis for those who have surgery on their heart is good, due to the location of Gabriel's tumour, the NHS are unable to perform surgery in this instance. If the family's GoFundMe appeal is unable to raise 140,000 to perform the operation privately at a top class facility in Boston, Gabriel could die at any moment.

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Speaking with SussexLive, Lina said: "One doctor diagnosed that it was going to be the end soon for Gabriel. The tumour is on his left ventricle and they didn't know if it was going to keep growing and block his heart.

"It causes problems, the blood flow is bad, it may mean he cannot send blood to his body parts. It is associated with dangerous rhythms - cardiac arrhythmias which can cause sudden death, that's how other people found out about it as their hearts just stopped beating."

For many people, an alternative option would be to insert a defibrillator to shock the heart if it were to go into an irregular state, also offering a good prognosis for the child. Gabriel is considered too small to be given one of these leaving surgery and gruelling medication, which lists cardiac arrhythmia as a side effect, as the only available options, though the fundraiser is the only realistic means of them reaching their 140,000 target.

"I'm always asking the NHS for surgery but they're not able to do so - medication is not the solution for sure," said Lina, who has two other young sons. His birthday is on the May 14 and the best gift would be for me to go to Boston with him."

Lina, 34, who hopes to return to her job as a waitress following maternity leave, said she had a relatively straightforward pregnancy and she and Rafael, a 30-year-old security officer, were eagerly awaiting the birth of their third child. A few tests at 38 weeks revealed some extra fluid in his brain but, despite scans on Gabriel's organs, nothing was revealed with the diagnosis after his birth almost causing Lina to faint.

The tumour has caused other issues too including tachycardia arrhythmia, a life threatening condition caused by Gabriel suffering from bronchitis, and Lina said: "Because of the tumour pushing into his lung's airways he keeps getting respiratory infections making it hard for him to cough. He's had about six of them and it takes three or four weeks for him to get a bit better but then it starts again, I haven't been sleeping very well as a result.

"They have to experiment a bit to see what medication helps with his condition. Every two weeks we had to go to hospital to keep monitoring him and check his cardiac arrhythmias."

A constant fear caused by Gabriel's condition is the possibility of his heart suddenly stopping after more cardiac arrhythmias, something no parent should ever have to go through. This has caused great fear and unease for both parents leaving them eager to raise the money as soon as possible.

"In the night times I used to just keep waking up and checking on him," said Lina, who is originally from Lithuania. "We have lots of pictures of him, I keep taking them for memories of Gabriel, just in case the worst happens."

Lina was grateful when the NHS sent MRI scans to the Boston Children's Hospital, and, though she knew the private care would be expensive, was shocked when she saw the cost. "I thought it would be around 50,000 but I was like, woah, that's a lot of money," she said.

"I hope the NHS learn to do it so if it comes up again in future they can do it for themselves. We're doing everything we can to publicise, I've been looking non stop to find some ways to help out and hopefully we will get there but it is just so much money."

Anyone who wishes to donate to the fundraiser can do so by clicking here.

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Crawley family devastated after son born with rare heart tumour requiring 140,000 surgery in Boston - Sussex Live