Pioneering procedure on baby with rare swallowing condition

A baby born with a rare condition that left him unable to swallow has undergone a pioneering procedure at Evelina London Children’s Hospital. 

Baby Albie, from Aylesbury, was born on Christmas Eve in 2020 at Stoke Mandeville Hospital in Buckinghamshire. A few hours after he was born, doctors discovered Albie had two life-threatening birth defects affecting his oesophagus (food pipe) and trachea (airway) known as trachea-oesophageal fistula and oesophageal atresia.

This is when the upper part of the oesophagus doesn't connect with the lower part, and so food can't reach the stomach. It also allows air to pass from the windpipe to the oesophagus and stomach. Combined, these rare conditions meant that Albie couldn’t safely swallow.

Doctors told parents Hannah and Jedd Foy Shoult that Albie needed to be transferred to a specialist children’s hospital for emergency surgery to repair the birth defects.

Albie was rushed to the neonatal intensive care unit at Evelina London Children’s Hospital, where he was put on a ventilator and had emergency surgery at three days old to enable him to swallow safely.

Albie’s mum, Hannah, 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 to Evelina London. For one it has a phenomenal reputation, but also my dad was a specialised medical engineer for years and always spoke very highly of the hospital having worked in almost every hospital in the UK. Given their specialised understanding of rare health conditions in children it was a no brainer.”

As well as having conditions that affected his swallowing, Albie also was born with a congenital heart defect called coarctation of the aorta – where the main artery in the body is too narrow – and had major heart surgery when he was just seven days old.

Albie was only six weeks old when he became one of the first in the UK to have a new procedure to stretch his oesophagus, making it easier for him to swallow.

The new method uses a small thin tube that inflates repeatedly like a balloon, to gently stretch his oesophagus. Albie’s parents were able to continue this treatment themselves at home.

Kirsty Brennan, consultant paediatric and neonatal surgeon at Evelina London Children’s Hospital, said: “Albie was the first baby at Evelina London that we have successfully treated with a new method, called intermittent balloon dilatation of the oesophagus. This involved placing a small thin tube, called a catheter, into his oesophagus. It looked similar to a nasogastric tube that came out of his nose. This inflated like a balloon, to gently stretch his oesophagus so he would be able to swallow liquids and soft food more easily. When Albie was well enough to be discharged home, his parents continued to inflate the balloon three times a day.

“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.”

During his first year, Albie visited Evelina London Children’s Hospital 21 times for several procedures and appointments, and had three major surgeries.

Mum Hannah continued: “The first year with Albie was really challenging. We spent a lot of time in hospital and away from our home. However, all of the team at Evelina London that looked after Albie were amazing. We were never ‘fixed up and sent home’, everyone was so caring and understanding. They made us experts in his condition. His second procedure, when he was almost one year old, made a huge difference. He was a like a different baby. The whole team was great. In particular, Albie’s surgeons Kirsty Brennan and Iain Yardley. They would not only check on Albie, but also me as a mother. They looked after us as a whole family.

“Over the past six months, we’ve been slowly weaning Albie and introducing solid foods. It’s been quite difficult at times as he also suffers from reflux and the muscles in his oesophagus don’t work as well. It’s been lots of trial and error, and seeing what works best for him. 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.”

To thank our expert paediatric and neonatal surgical team, Albie’s family and friends have raised over £1700 for Evelina London Children’s Charity. Albie’s dad, Jedd, and his uncle abseiled down the side of St Thomas’ Hospital in September 2021 and a family friend ran the London Landmarks half marathon.