Parents ‘final kiss’ with newborn son before life-saving 10-hour heart surgery

If it wasn’t for the knowledge and skill of Bertie’s sonographer, the now-16-month-old might not have survived his birth.

Bertie, who lives in Wandsworth with his mum Clare and dad James, was born with congenital heart disease which, if not noticed, could have caused him to become oxygen deprived and very ill shortly after being born.

Now Clare and James are campaigning and raising money for Tiny Tickers, a charity which aims to improve the early detection and care of babies with serious heart conditions. 

They hope that, in raising as much money as they can for the charity, better training can be delivered to sonographers across the country so that potentially fatal heart defects are detected every single time.

Clare Coe, 33, became pregnant with Bertie in summer 2019, and at the 20 week scan they received the unexpected news that the sonographer could not identify their baby’s heart fully.

Clare and her husband James, 32, returned the next day for a follow-up scan with a heart specialist, where they were informed that little Bertie had Transposition of the Great Arteries (TGA) – the two main blood vessels leaving the heart were swapped over – and a large ventricular septal defect (VSD) – a hole in his heart.

Bertie was born at full term 20 weeks later, on March 11, 2020 at the Chelsea and Westminster Hospital. Straight after he was born Bertie was taken to the NICU for a short-term fix procedure for the TGA. 

This procedure was a balloon atrial septostomy, which allows blood from both sides of the heart to mix together.

Worryingly, this was unsuccessful in the first instance, and Bertie was transferred to the Royal Brompton Hospital where the procedure was successfully carried out that evening. 

On April 9, 2020 he had his TGA and VSD operation at the Evelina London Children’s Hospital – which meant a gruelling 10 hour wait for his terrified parents.

Clare said: “Early in the morning we took Bertie down to the operating theatre and gave him a final kiss before surgery and headed home.

“Words cannot describe how we felt at that point, we broke down as they carried Bertie away and I just went numb.

“After ten long hours of waiting, we had a call for us to return to the hospital and were told Bertie’s operation had gone well and we were able to see him in the PICU.

“After some initial heart rhythm abnormalities, Bertie stabilised and moved from PICU to the ward after six days, and after just two nights on the ward, we were discharged home.

“The period in hospital was full on and stressful, heightened by Covid-19 anxieties and precautions, however the staff in all departments were fantastic which is something we will be forever grateful for.

“Heading home was a surreal but an incredibly pleasing moment, something we had longed for but also something which often felt a long way off.”

Clare said that they feel “incredibly lucky” that Bertie’s serious heart defects were picked up in time so that they could have all the necessary precautions in place before he was born.

They had a planned caesarean section with the heart team at the Royal Brompton, who came to the Chelsea and Westminster so that they could intervene immediately.

However, not all babies are so lucky, which is why Clare and James are so dedicated to raising the funds to improve training for sonographers.