Ellie-Mai’s Story

Ellie-Mai was born in 2011 at 42 weeks. She is my third child and I had an unremarkable pregnancy and straightforward labour. As soon as she was born I knew there was a problem. She was screaming, as if in pain, and would not latch on. The midwife insisted it was because of a quick labour. I was not convinced!

We brought her home and the crying and poor feeding continued. After 12 weeks she was almost unresponsive, was hospitalised (again) and given an NG tube. She never managed to wean, as food was too painful, and at 11 months we moved to a PEG. We had lots of tests and many conditions ruled out, but it wasn’t until she was 3 1/2 that we spent 2 weeks in Addenbrookes and got the diagnosis of Chronic Intestinal Pseudo Obstruction. Having a diagnosis was a huge step forward, but with it being such a rare condition, information is difficult to come by.

In May 2018, I found the PORT charity group on Facebook and the support has been amazing. It is so nice to be able to ask people for their experiences on things you are going through. In September 2019, Ellie-Mai had an ileostomy. The advice and support from PORT has been a lifeline. People helped us as parents to prepare ourselves, and Ellie-Mai for the stoma. She, incidentally, has taken to it like it’s always been there and it really has been a life changer for her. It has removed the need for pullups and the constant pain is now greatly improved. She no longer has repeated stays in hospital for litres of Klean Prep and it has afforded her a far greater degree of autonomy. With that said, there have been issues. Her sodium needs supplementing and her iron sometimes does. She gets lots of aches and pains, and we are now considering the possibility of EDS. Overall though, her stoma, Tigger, has been a positive step for her, and despite some setbacks we have a very happy 9 year old daughter.

We have thoroughly appreciated the support we’ve received, and the lovely Sue Stewart even managed to arrange a teddy for Ellie-Mai with a Mic-Key Button and an ileostomy. He is adored, and has also been into school to help with a talk on what Ellie-Mai has had done. PORT is an amazing charity, and the personal support they give is priceless.

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