Ellis Melhuish spent the first four months of his life in a hospital after doctors discovered he was born with a rare immune system disorder, which means even a common cold could kill him.
His parents Savannah, 26, and James, 28, based in Staffordshire, England, were warned at the time of the 20-week scan that their son may be born with a complex heart defect but were reassured that, following a life-saving surgery, he would be fine.
However, just weeks after Ellis was born in February this year, he was diagnosed with severe combined immunodeficiency (SCID) and CHARGE syndrome.
Infants born with SCID have defects in their immune cells. As a result, these children have problems fighting infections and usually die within the first two years of life. The rare CHARGE syndrome affects around one in 10,000 babies and causes issues with sight and vision, balance, breathing, and circulation.
Savannah, who is originally from Barnsley, South Yorkshire, said she feels blessed to hold her “happy little boy” even if they are likely to spend the first year of his life in hospital as they could have easily lost him to infection.
She said: “When he was born and they told me about his unusual features, and went for genetic testing, that’s when it all started to fall apart.
“It started spiraling for me and James, we were so confused because they told us it would be fine. But they couldn’t give us any more answers and we were completely lost. It was absolutely petrifying, I’ve never been more scared in my entire life—it was horrifying.
“Every time we thought we were getting closer to bringing him home, it got worse and worse. It was absolutely devastating.”
Savannah said she had a “high-risk” pregnancy due to the heart defect, but after numerous tests, doctors ruled out most genetic conditions.
Baby Ellis was born on Feb. 20 via C-section at Royal Stoke University Hospital, Staffordshire, weighing 6 pounds and looking “happy and healthy.” The family was able to share a cuddle before he was taken to the ICU for further tests before being prepped for open-heart surgery.
“They said he might not be breathing,” Savannah said. “But he came out kicking and screaming and all happy. “To us, he looked perfectly normal, nothing looked unusual. He was happy and healthy.”
The brave little boy underwent a 7 1/2-hour surgery to correct his aorta, the largest artery that transports blood from the top-left heart chamber to the rest of the body. His aorta was on the wrong side of the heart and was surgically moved from the right side of his heart to the left.
Following Ellis’s SCID diagnosis, the parents were told he could undergo a thymus gland transplant at a specialist hospital in London. The operation replaces the gland that produces white blood cells with 14 pieces of donated healthy glands in either thigh with the hopes that the baby’s immune system kick-starts.
He is only the 51st person in the UK to have the pioneering surgery and only the 151st globally.
Without the surgery, he likely wouldn’t have survived past his second birthday.
Savannah said: “We have been told we are so lucky that we spent nine weeks at an open ward and he never picked up any infections or viruses because it could have been fatal for him.
“The story would have been very different and we’re so grateful he has a fighting chance.”
Before Ellis’s immunodeficiency was discovered, doctors had told the new parents that they would likely spend four to six weeks in hospital due to his heart condition. But they now believe it is likely they won’t be able to take their firstborn home for another six months, but still, they have kept upbeat and said they’d make the “most of every day.”
Savannah, a former child protection officer, said: “He’s absolutely incredible, he’s a little fighter. He’s done so many things that people never expected.
“He’s making improvements every day. Having your thighs cut open is an extremely painful surgery, but he was smiling and happy the next day.
“It’s been so difficult for me and James but we’re trying to stay positive about it—and we think children are what we make of them. We don’t want to ever set limitations for him and help him grow in life.
“We don’t know how long Ellis’ life expectancy will be, we simply don’t but we’ll make the most of every day.”
Epoch Times staff contributed to this report.