SWALLOWING is not something we normally think about unless there is a specific problem.

Yet, one in every 3,500 babies born each year in the UK will be affected by a congenital condition which affects the oesophagus – the tube through which food passes from the mouth to the stomach – which means there is a problem swallowing, and choking follows.

Tracheo-Oesophageal Fistula (TOF) and Oesophageal Atresia (OA) means babies need to have intensive neo-natal care prior to surgery, normally within days of birth. Before surgery began being carried out in the 1940s, babies simply died.

Three years ago, Carrie Ball and her fiancée Paul Kearns, who live in Little Lever, had never heard of the condition. Today, they are very knowledgeable about TOF and OA.

On Christmas Eve, 2016, their longed-for baby daughter Erin was born with TOF – and within a very short time was struggling to breathe.

Only swift intervention by staff at the Princess Anne Maternity Unit and then care and surgery at St Mary’s Hospital in Manchester saved her life.

Carrie, a pet bereavement counsellor, and Paul, a dental technician and independent author, had no previous clue that anything might be wrong with their baby. Carrie already had a son, nine year-old Quinn, from a previous relationship, and had been well during pregnancy.

She had a short but straightforward labour and Erin arrived in the world just before midnight, weighing a healthy 6lb 4oz. However, when cuddling her daughter back on the ward, Carrie noticed the baby was blowing large bubbles and her lips were going dark purple.

She alerted medical staff and Erin had to have her windpipe cleared. Shortly afterwards, the couple were informed that their daughter had a condition where the upper part of the oesophagus does not connect with the lower part and the stomach.

This not only prevents food getting through to the stomach but also causes air to pass from the windpipe to the oesophagus and stomach, and stomach acid to pass into the lungs.

When Erin was swiftly transferred to St Mary’s Hospital, the young couple were told she would need an operation. And at two days old, she had a procedure to re-attach the two parts of the oesophagus which, fortunately, had only a small gap.

“It was just terrible seeing her with all these tubes attached to her,” recalled Carrie. “We realised that, even with successful surgery, swallowing would always be a problem for Erin and that we would have to monitor everything she put in her mouth.”

Since then, Carrie and Paul have had to plan everything she eats and drinks and find the balance between carefully watching their little girl and allowing her to develop independently.

“Fortunately, Erin is a very feisty little girl,” stated Carrie. “She does choke sometimes but she won’t always let us help her and fixes it herself.”

She attends Gigglers Day Nursery in Little Lever “where the staff are brilliant. They always sit with her when she eats and watch her carefully,” added Carrie.

The only clue to Erin’s condition is a rather deep, barking cough. “It sounds bad but it’s a TOF’s cough where she’s clearing her tubes,” stated Carrie.

Diane Stephens, manager of the TOFS charity, commented: “Although the condition is not well-known, there are now many more adults living with it. Some are fine but some may always struggle.”

The charity is able to help them and the parents of young children, offering information, support and guidance and by putting them in touch with each other.

* For more information go to https://www.tofs.org.uk/