The parents of a two-month-old boy who died after developing a rare condition have spoken for the first time about the ‘heartbreaking’ loss.

Identical twins Olly and Austin Yerbury were born nine weeks premature at Royal United Hospital in Bath.

Olly, who was born with an abnormal left kidney, developed ongoing breathing difficulties shortly after birth and a decision was made to intubate him. It took three attempts to place the breathing tube so he could be intubated, an inquest was told.

Difficulties were also experienced with passing a nasogastric tube and this led doctors to suspect Olly had a TOF/OA - an abnormal connection between his oesophagus and trachea, with a possible perforation. Olly was transferred to St Michael’s Hospital in Bristol for further management.

Six days after being transferred and after ‘conservative’ treatment, he underwent surgery to fix his TOF/OA and the perforation.

Shortly thereafter, Olly developed chylothorax, a rare condition where fluid leaks in between the lung and chest wall which can cause a build-up of fluid and subsequent chest pain and breathing difficulties.

The inquest was told that the build-up of fluid started affecting Olly’s kidney function. As his condition continued to deteriorate his parents Will and Georgie, aged 37 and 33 respectively, sought the opinion of specialists at Great Ormond Street Hospital. However, Olly became too unwell to be transferred to London and sadly died. 

Following his death Will and Georgie, of Frome, Somerset contacted several law firms for help in establishing answers as to why Olly died but were turned down. After the family contacted specialist lawyers at Irwin Mitchell, the legal experts agreed to represent the family free of charge at an Inquest into Olly’s death.

The Inquest has now ended, with the Coroner concluding that Olly’s death was due to natural causes. He was born at 30+3 weeks and was small. He had one functioning kidney, a TOF / OA and a perforated oesophagus, which it was established was due to the misplacement of the nasogastric tube. He underwent surgery to treat his TOF / OA and perforation on 2 July 2019. Following surgery, he developed chylothorax which, on the balance of probabilities, was caused as a result of damage to his thoracic duct during surgery. The management of his surgery and treatment was appropriate, but he sadly died.

Eleri Davies, the legal specialist at Irwin Mitchell representing Will and Georgie free of charge, said after the hearing:  “What should have been such a joyous occasion for Will and Georgie turned to heartbreak.

“The last couple of years and trying to come to terms with Olly’s death has understandably been incredibly difficult. Will and Georgie have had to try and grieve for their son, while having a number of questions about what happened to Olly and a mountain of complex medical terminology to try and understand.

“Supporting those who need help the most is at the very core of our philosophy. While nothing can make up for the family’s loss we’re pleased that we at least have been able to support Will and Georgie, with the help of barrister Marcus Coates-Walker from St John’s Chambers who provided the advocacy at the three day Inquest.  It’s been a distressing time for the couple and we’re grateful we could help provide them with the answers they deserve.”

Will and Georgie, who have another daughter, Penny aged five, found out that they were expecting in December 2018.

During an early scan it was discovered Olly’s left kidney was abnormal, Flax Bourton Coroner’s Court was told.

Georgie attended RUH at around midday on 25 June, 2019, after her contractions started earlier that day. The inquest was told that over the next hour and 40 minutes staff had difficulties picking up the babies’ heartbeats on a scanning machine. They examined Georgie at around 1.55pm and discussed a care plan as neonatal units at Bath and St Michael’s were full.

Staff slowed Georgie’s labour and she remained at Bath. Olly was born at just after 10.30pm and Austin around four minutes later.

Olly was admitted to the neonatal intensive care unit. After two unsuccessful attempts, doctors inserted a breathing tube and discovered he also had a collapsed right lung, the inquest was told.

After several discussions between Bath and Bristol in which a suspected TOF/OA was raised, Olly was transferred on 26 June. He underwent surgery on 2 July.

On 8 July fluid from Olly’s chest drains was tested and it was suspected he had chylothorax. Olly was fed via a drip and given drugs to try and minimise the leaking fluid.

However, Olly’s condition continued to deteriorate despite his medication being increased, the inquest heard.

After Olly’s fluid loss started affecting his kidney function his parents contacted Great Ormond Street Hospital.

During discussions between Great Ormond Street and St Michael’s, doctors from Great Ormond Street said they would have tried the same treatments that doctors in Bristol had, but agreed to help.

However, Olly continued to deteriorate before a specialist team of medics could be assembled in London to treat him. He was then too poorly to travel and sadly died on 10 September 2019.

The couple said after the hearing: “We were overjoyed when we found out that we were expecting again and when we found out it was identical twins it made it all the more special.

“It was such an exciting time but that excitement became fear and worry when Olly and Austin were born. It was such a distressing and upsetting time and it was horrible to see Olly hooked up to machines and tubes.

“He was such a fighter but sadly it all got too much for him. Having to say goodbye to him is the hardest thing we’ll ever have to do.

“Once the initial numbness wore off we knew we needed to find out more as to why Olly died. It was such a difficult time. We just had an overload of information, none of which really made any sense. It felt that every time we asked for help people didn’t want to listen.

“We were totally out of our depth so once we found someone to represent us it was like a burden had been lifted. An inquest isn’t a normal thing for a family to go through. Without the help and support we’ve had we don’t think we would have got the answers we wanted.

“We remain devastated that Olly’s not here to be causing mischief with Austin and his big sister Penny. We will never stop loving him and he’ll always be part of our family.”