A Sunderland toddler is 'thriving' after returning from the United States, where she underwent life-saving heart surgery. Four-year-old Ivanna Potts had the procedure at Boston Children's Hospital in March and is now back home in Red House, looking forward to a normal life.
While her family is overjoyed, they have raised concerns about how further complications in her case were only discovered when she was about to undergo surgery in America. Ivanna's story captured hearts across the North East late last year, with over £250,000 raised for her surgery and travel expenses.
Dad Jack said they had 'put our trust in the system' for years. He stated: 'From the moment she entered the world, we were told her condition was rare, severe and complicated. We accepted that there would be operations, setbacks and uncertainty. What we never expected was that one day we would be left feeling that we had run out of answers.'
'As parents, all we ever wanted was clarity. We weren't asking for guarantees. We weren't asking for miracles. We simply wanted to know that every possible option had been considered before anyone decided there was nothing more that could be done.'
He said years of appointments left them with the 'weight of unanswered questions.' They eventually decided to transfer Ivanna's care from the Freeman Hospital to Great Ormond Street in London, while also seeking a second opinion in the US.
Jack explained that when specialists in London said there was no surgical option they would undertake, they felt their 'only choice' was to raise money to take Ivanna to Boston, where a team was willing to perform a complex surgical procedure.
However, upon arrival in Boston this spring, the family was shocked to learn that, after further investigation, 'Ivanna's condition was far more critical than we had realised.' Jack added that tests in Boston concluded Ivanna was in severe heart and respiratory failure.
He said: 'As parents who had travelled thousands of miles after being told no surgical options existed, watching a new team uncover significant findings while our daughter was in severe heart and lung failure was difficult to comprehend. We found ourselves asking questions that remain with us today.'
The family questioned why such findings only came to light at this stage, whether they could have been identified earlier, and if earlier intervention would have helped.
After initially postponing surgery, in March specialists decided to proceed, and Ivanna underwent a 12-hour operation. The family said it was a success and had 'transformed her future.'
Jack stated: 'Many dedicated people cared for Ivanna throughout her life and we remain grateful for their efforts. However, gratitude should never prevent difficult questions from being asked.'
'Our family believes there should be transparency surrounding the decisions, assessments and conclusions that shaped Ivanna's care pathway.'
Jack said they want other families in similar situations to feel able to 'explore every available option.' He added: 'Had we accepted that there was nothing more that could be done, our daughter would not be where she is today.'
'We were told there were no surgical options. Boston found one.'
A spokesperson for Great Ormond Street Hospital for Children said: 'Every decision our clinicians make about a patient's care is based on what is best for their long-term health and wellbeing, and this sometimes includes deciding that something may not be in their best interests.'
'This isn't a decision we make alone and we work with other experts in the field to seek second opinions and further expertise on complex cases such as Ivanna's. We're pleased to hear that Ivanna is doing well and look forward to seeing her again at GOSH soon.'
A Newcastle Hospitals NHS Trust spokesperson added: 'We are pleased to know that Ivanna had a successful procedure at Boston Children's Hospital. As Ivanna is now under the care of Great Ormond Street Hospital, we're unable to comment in any more detail.'
Ivanna has been supported by the Red Sky Foundation. Find out more about the Sunderland-based charity online.
