Piper, now aged three, loves eating food now and has been doing really well, she said.
Yet Piper’s condition is life-long and she will receive care from the surgical team at Addenbrooke’s Hospital until she is 16, her mother said.
“I cannot tell you how many times I have been sat in front of a GP trying to explain her condition and sort of being disregarded and it’s been happening to parents of TOF babies and children all over the UK.”
Samantha believed there was a lack of knowledge of the condition amongst healthcare professionals and recalled how once a GP Googled the condition during a consultation.
“For so many parents that fight is not over – or it is just begun.
“I don’t think that NHS strategy of let’s wait and see will ever change, but if we can get the conversation going – I am very happy to talk about Piper.”
Denise Townsend, the deputy chief nurse for Mid and South Essex NHS Foundation Trust, said: “We sincerely apologise that the level of care received by Piper was not to the standard she and her family should have expected.”