Tom takes on Sheffield 10K to give back after baby Sadie's life-saving care

When Sadie was born at North Tees Hospital in Stockton in February, her family had no idea they were about to face the most difficult journey of their lives.

Within hours of her birth, doctors knew something was wrong. Sadie had low oxygen levels and a heart murmur, while clouding on a chest X-ray initially led medical staff to suspect pneumonia. She was started on a course of antibiotics while further investigations were carried out.

However, when Sadie underwent a routine heart scan four days later, doctors discovered she had Truncus Arteriosus, a rare congenital heart defect where a single blood vessel leaves the heart, causing oxygenated and deoxygenated blood to mix. Further examinations revealed several holes in her heart, a leaking valve, a severely narrowed pulmonary artery, a partially collapsed lung and weakened airways in her neck.

A few weeks later, the family received another devastating blow when Sadie was diagnosed with Cat Eye Syndrome, an extremely rare genetic condition affecting around one in 150,000 people.

The diagnosis came as a complete shock. Throughout the pregnancy, Sadie's mum had undergone numerous scans, none of which had identified any concerns.

On the day of her diagnosis, Sadie was transferred to Freeman Hospital in Newcastle. The following day, the family were offered a room at Scott House, run by The Sick Children's Trust.

The accommodation proved invaluable. With a five-year-old daughter at home, having a family room with three beds meant they could remain together during weekends and school holidays, while staying just minutes from Sadie's bedside.

At only nine days old, Sadie underwent her first open-heart surgery. Surgeons fitted an artificial conduit made from tissue taken from a cow's heart and repaired one of the holes in her heart.

But the challenges were far from over.

At 10 weeks old, Sadie's leaking valve deteriorated significantly and she required another operation. An initial attempt to repair the valve was unsuccessful and, after one to two weeks, doctors determined that a full valve replacement was her only option. Because Sadie was so small, a mechanical valve could not be used, meaning surgeons had to rely on a donor valve instead.

Before the procedure, Tom and his partner faced every parent's worst nightmare.

"The doctors sat us down and told us Sadie's chances of survival were 50/50," said Tom. "We were told there was a possibility we might never see her again."

Thankfully, the surgery was a success and Sadie began to make remarkable progress.

After spending six weeks in the Paediatric Intensive Care Unit (PICU), attention turned to treating her narrowed pulmonary arteries. At five months old, Sadie underwent a further procedure to fit a stent, dramatically improving both her breathing and oxygen levels.

Then, after 183 days in hospital, the moment the family had dreamed of finally arrived.

At six months old, Sadie was discharged and able to go home.

Reflecting on the experience, Tom said: "It was the biggest shock of our lives and the hardest thing I have ever been through. I hope it's something we never have to go through again."

Throughout those six months, Scott House provided the family with much more than just a place to stay. It gave them somewhere to rest, eat, work, spend time together and connect with other families facing similar challenges.

"The support was incredible," said Tom. "The staff always had time for us, and honestly, without Scott House, we don't know what we would have done."

Now, as a way of thanking The Sick Children's Trust for the support they received during Sadie's treatment, Tom is taking on the Sheffield 10K and raising funds to help other families stay close to their seriously ill children when they need it most.