Written for me by Emily , Caitlins mummy x

Caitlin was born at 27 weeks in December 2021, and developed necrotising enterocolitis (NEC) at exactly 1 month old.

NEC is a serious condition (Wikipedia describes it as “devastating”) where the bowel becomes inflamed. In mild cases it can be treated with gut-rest and antibiotics, and around 75% of babies will survive. In severe cases, the inflammation develops into necrosis and surgery is needed to remove the affected bowel. Over half (58%) of babies who have surgery for NEC will die during/shortly after surgery, and those who survive will likely suffer long-term complications.

Caitlin’s NEC was as bad as it gets. The sepsis was overwhelming her; she was reliant on a ventilator, her kidneys started to fail, and she couldn’t maintain her blood pressure. This meant her brain went without oxygenated blood, and she has been left with significant damage.

When the decision to take her to theatre was made, it was because she was certain to die if she didn’t go, but ‘only’ likely to die if she did. Darryl and I had to sign a consent form, which felt like we were agreeing for her to die. We walked behind her incubator to theatre; a nurse told us to say goodbye at theatre reception and asked if we wanted to take a photo. I knew the subtext - her last photo.

Caitlin somehow survived the operation, although she lost over half of her small bowel. It was completely necrotic, perforated, and her abdomen was “full of pus”, according to her op notes. She was far from out of the woods. The next few days were difficult as we tried to get her pain under control but - slowly - she came off the inotropes, then the ventilator, and her numbers started to improve. We had our baby back!

The next few months were difficult in a different way. Her stoma didn’t work very well and the skin on her abdomen started to break down because it leaked so often. The decision was made to reverse it early. At her reversal operation, things didn’t go as smoothly as hoped and she lost quite a bit of her large bowel too. She became septic again, although not quite as badly as the time before.

Caitlin left NICU at 4.5 months old and has been a regular at the hospital since. At the time of writing this, she’s spent more of her life in hospital than out.

Long term, she has difficulty absorbing milk and growing, because she has so little bowel left. Her surgeries caused strictures and adhesions in her abdomen so she’s had another surgery to fix those, and needed to go to PICU. She has short bowel syndrome, has a Hickman line for PN, and a gastrostomy so she can be pump fed.

No-one fully knows what causes NEC: prematurity is a risk factor, but most premature babies don’t develop it. More research is needed to understand what causes it, how to prevent it, and how best to manage it - which NEC UK supports. Caitlin is very proud of her Nana Shell for running the London Marathon to raise money for NEC UK, and awareness of the condition 🖤

Nana Shell is beyond proud to be doing this and more so for my wee girl..Despite being advised not to run again due to my FND I could not say no when I was lucky enough to get a ballot place... Running had always been my outlet so not to have it has been tough...As I'm doing it I thought that it would be amazing to raise money too.. Everyone that knows me has heard how immensely proud I am of Caitlin.

She is a true warrior and has overcome so much..She has a long way to go . Her strength will inspire me as 26.2 may affect my body but its nothing compared to what she experiences daily. Seeing a child in pain is heartbreaking.. Nana will do this Caitlin... 

If you read to the end Thank you , it means so much x