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My Journey Surviving Necrotising Enterocolitis

Updated: Sep 5, 2022

Witten by Anna Hulme Adult NEC Survivor

On May 17th ( I recently found out this is the day of NEC awareness!) 1999 I was born a healthy term+6 baby however I developed NEC soon after birth. I wasn’t feeding and I was going grey in colour, my abdomen distended. I was then rushed to the special care unit and put on antibiotics and x-rays were taken in the hope that this would improve things, the next day I was transferred to the local Children’s hospital in an ambulance and was sent straight into emergency surgery. The affected portion of bowel was removed and I had an ileostomy formed. Alder Hey Children’s Hospital in Liverpool UK saved me even when I had the worst of odds and not many babies had survived. I then spent the first year of my life in hospital on Ward E3 I finally got home just before my first birthday whilst still on TPN to support the transition between Hospital and home and spent five years with a gastrostomy to ensure I got plenty of nutrients.

I have always asked ‘why me’ and until quite recently I didn’t know what NEC was and why I had to have a Stoma bag. I wish that I had found the NEC society and NECUK earlier.

When I was growing up there was never enough awareness and talk about stomas which made me feel alone and the only person in the world who had a bag, however that wasn’t the case. Stomas are often related to older people but people of all ages have bags. I met other young people over a number of years through charities and this also gave my family a chance to speak with other parents and know that we weren’t alone.

I was determined to experience life without the bag, so I opted to have the ileostomy reversed when I was 13 years old. 11 surgeries later, I now empty my bowels in the normal way. My gut is now much shorter so everything travels through a lot quicker. As a result I have to go to the toilet frequently up to 20 times a day I always feel like I am looking for toilets and trying to explain why to people.

As a child I missed quite a lot of education due to illness and had a lot of time off school so I did my GCSEs a year behind and then my A-level exams another year behind so I actually did an extra 2 years of school so that I could have the best chances for my future.

I’m now a Student Midwife at the University of the West of Scotland. I have always wanted to work for the NHS so I am so proud to be helping others.

As part of my course we talk about NEC which is the disease that made me so ill and I shared my story to all 100 people in my class which was possibly the biggest step I have taken, it was the first time I had spoke openly to people who have not heard of a stoma before. Many of my friends are very supportive and love to share my story too. We still don’t know what caused me to develop NEC and I hope to find out the reason one day. Being able to share tips and stories with others who know what it’s like is interesting and empowering. It’s turning something which could be perceived as negative into a positive experience. I addressed 250 health professionals at the ERIC conference in 2016 as a member of the ERIC young people panel. ERIC is a charity in the UK that supports children with incontinence.

I want people to know that even as a NEC survivor there is no limit on what I can do, most of the time I just need to plan to make sure I don’t get caught out needing the toilet.

My medical condition has made me who I am today. More determined and more active as well as more caring and resilient.

I was told I could never swim. In 2016 and 2017 I took part in an English Channel Swim Relay and with my team we swam across the channel successfully on both occasions.

I have done some incredible things, I have always enjoyed sports, I have competed in triathlons. I carried the Olympic Torch in 2012 when the Olympics came to London.

I always took part in every activity available to me, I was a member of the Girl Guiding organisation and the Scout Association for a number of years. I was an Air Cadet with the Royal Air Force Air Cadets for 6 years, through this I did some incredible things.

I would love for more people to talk about NEC and the early signs and the outcomes of it like the need of a stoma as the fear I had of people finding out about mine made my childhood quite tough but I now look back and it has moulded me into the person I am and I hope my experiences can help me to be the best midwife I can be and I would particularly love to help people with a bowel or bladder problem who are pregnant.

Last month I delivered my first baby as a Student Midwife ( as pictured) and it was the proudest moment of my life! I’m excited to go back out to placement in January and I am looking forward to my neonatal ward placement just before Easter where I hope I can share my story to any families on the neonatal unit at that time.

Anna Hulme

Adult NEC Survivor & Student Midwife

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