Nicola Margiotta

Parent Volunteer

Nicola & Freddie's Story

Hi I am Nicola and I am a NEC survivor. I had NEC as a new born back in 1980, I was born at 29 weeks and I was very lucky to survive then as I had perforated in 3 places before they operated and then I had reversal at 13 months but I was in hospital for a whole year back then! Due to the extent of my original surgery the scar tissue left me infertile and it took 3 rounds of IVF but in 2015 I had identical twins. Sonny and Freddie. They were born at 28 weeks, Sonny weighed 960g and Freddie weighed 630g. At 6 weeks my Freddie caught NEC, has 2 surgeries and a third for the reversal, we were so lucky he only lost 38cm of bowel in total. Freddie only had his stoma for 8 weeks until he was able to be reversed but following the 2nd surgery he caught and infection and got sepsis, that was a moment I really thought we may lose him. I feel like NEC has blighted my whole life but I'm so grateful we both made it, I think it's so sad there has been very little medical advances in this condition for over the last 30 years and I feel so strongly that we should be trying to change the outcomes for other babies, there should be a standard procedure for diagnosis and treatment of NEC so hopefully more babies can be saved from this very cruel disease.