A four-month-old baby nearly died after choking on his own vomit.
Romey Lloyd was rushed to hospital on Thursday, April 27, after his terrified family noticed he was having breathing problems. His grandma Paula Mantle, 52, said: "He'd been sick and it had gone into his lungs. His heart swelled and crushed his airways. We took him to Hereford Hospital and he was transferred straight to Birmingham under clinical care.
"It was absolutely awful. I carried him into A&E and a paramedic was stood there. She took one look at him and said 'how long has he been like that for?' and I said 'about fifteen minutes', and she rushed us straight into resuscitation room, where he was put on a ventilator, and he was very close to death. It was as bad as it could get. We asked if it was life-threatening and they said yes."
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Romey, who was born with 42 missing genes, affecting his heart, kidneys and other organs, was placed in an induced coma. An X-ray revealed he had breathed milk into his lungs, and he was also diagnosed with pneumonia.
He was taken off oxygen on Tuesday, May 3, and is now on the road to recovery. But doctors have no idea how his condition will continue to affect him later in life, as they only know the function of 10 of his missing genes - leaving 32 currently unaccounted for.
Paula said: "When Romey was born, they noticed different facial features. His ears were lower than normal, his eyes were further apart and he had no chin. They had to do genetic tests, and we didn't get results for about four weeks."
Romey spent six weeks at Alder Hey Children's Hospital with his parents Kimberley Grisham and Christopher Lloyd. Following tests by Liverpool Women's Hospital, the couple, who live in Hereford, were told their baby could suffer from kidney and heart defects, eye and ear problems, and difficulty swallowing.
His physical growth has also been affected - as the infant has gained just 3lb since he was born in January, and now weighs just 9lbs, the size of a large newborn.
Paula said: "Nobody has any answers because we don't know how his genes will affect him. We know it will affect his heart, his kidneys. But we don't know how long his lifespan will be. Even at this time, it's very touch-and-go with his heart.
"He's on daily medication every day. He's got a feeding tube and he'll probably have a feeding tube for as long as he needs liquids for. He's only grown 4cm in the weeks he's been alive."
The human body typically contains about 2,000 pairs of genes, packed into 23 sets of chromosomes. Romey's missing genes affect his chromosome 6, the chromosome functionally associated with major human diseases, including cancer, heart disease, infectious, immune and inflammatory disorders and mental illnesses.
With the aim of helping her grandson, Paula set up an online fund-raiser for specialist equipment that would allow Kim and Chris to monitor Romey's oxgen levels from home. She also hopes to raise £5,000 for a special paediatric cot to keep him elevated and stop him choking again.
She said: "Kim needs as much support as she can. It's a very frightening time for them, but the fear will never go away unfortunately because Romney's condition every day is different. Kim has just been told by the hospital that Romey's body was starting to shut down. I just thank God that Kim is very cautious when it comes to Romey, as it could have gone undetected and had a different outcome."
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