Baby unable to swallow with rare disease gets life-saving surgery

At just seven days old, a baby who was born unable to swallow after catching a rare disease affecting his food pipe and airway, received a major life-saving heart surgery. As a result of his medical condition, he underwent two major surgeries within days of his birth after doctors found out he had two life-threatening birth defects a few hours after he was born.

In addition to having a major heart surgery, baby Albie had an emergency surgery to help him swallow safely when he was just three days old.

Only hours after his birth at Stoke Mandeville Hospital in Buckinghamshire, Albie was diagnosed with birth defects affecting his esophagus (food pipe) and his trachea (airway).

Doctors told his new parents, Hannah and Jedd Foy Shoult, that Albie should get transferred to a specialist children’s hospital in Central London for emergency surgery to repair the birth defects.

In a delicate transfer for the baby, his parents rushed to the neonatal intensive care unit at Evelina London Children’s Hospital. In the hospital, he was later put on life-saving equipment and underwent emergency surgery.

Specialist doctors diagnosed him with a rare condition, known as trachea-oesophageal fistula – affecting his airway – and oesophageal atresia, which blocked his food pipe.

As a result, the upper part of the esophagus did not connect with the lower part and food could not reach his stomach. Besides having trouble processing food, Albie couldn’t safely swallow.

On top of these two conditions, Albie suffered from a congenital heart defect called coarctation of the aorta, meaning the main artery in the body is too narrow.

Doctors pulled it off and achieved a major breakthrough by stretching Albie’s esophagus to allow him to swallow when he was just six weeks old. Albie also became one of the first babies to ever have such a medical procedure.

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His parents expressed “complete shock” at the diagnosis after Hannah reported having a “relatively straightforward” pregnancy.

She reportedly said: “My pregnancy was relatively straightforward until Albie was born four weeks early by emergency C-section at my local hospital.

“As he was a few weeks early, the neonatal doctor came to assess him and diagnosed him with the rare conditions. It was a complete shock to us. Albie needed to be transferred to a specialist children’s hospital, so we asked if he could go it’s Evelina London.

“For one it has a phenomenal reputation, but also my dad was a specialized medical engineer for years and always spoke very highly of the hospital having worked in almost every hospital in the UK. Given their specialized understanding of rare health conditions in children, it was a no brainer.”

In total, Albie visited Evelina London Children’s Hospital 21 times for various procedures and appointments.

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The life-saving procedure involves using a small thin tube that inflates repeatedly like a balloon, to gently stretch his esophagus. Dr Kirsty Brennan, consultant pediatric and neonatal surgeon at Evelina London Children’s Hospital, reportedly said he was the very first baby at the hospital to have been successfully treated with the surgery.

He said: “Babies born with these rare birth defects are not able to swallow safely, if at all, without complex life-saving surgery. A huge team of specialists have been involved in Albie’s treatment and we’ll continue caring for him at regular outpatient appointments to check on his development. It’s great to see how well he is doing.”

While Mum Hannah said Archie’s first year was “really challenging”, she thanked the “caring and understanding” medical team for saving her baby after “lots of trial and error.”

She concluded: “The other day when I was eating breakfast, he stole a piece of toast off my plate. I was so amazed to see how well he ate it that I burst into tears. It was such a great moment, he’s made excellent progress and I’m so proud of him. We now have a happy, lively toddler.”

Albie’s family and friends have since raised £1,700 for Evelina London Children’s Charity.

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