NEC UK is honoured to share the stories of families impacted by Necrotising Enterocolitis and prematurity 'November is Prematurity Awareness Month' Here is Olivia Jane's story shared by her Dad Graham.
Hi I'm Graham, I'm a parent volunteer for NEC UK Charity.
On the 21st of July 2019 my wife Caron gave birth to our gorgeous little baby Olivia . Olivia was born Premature at 28 weeks after an emergency c section because she was not developing the way she should have been in the womb . thought out the whole pregnancy there was plenty of complications and when she was born she only weighed 1LB 3OZ , absolutely tiny little thing . Me and Caron were both very worried that Olivia would not survive because of the size of her but she was an absolute fighter . She was taken straight to NICU in Leeds general infirmary and once she had been stabilised I was allowed to go see her . Olivia only being an hour old was breathing by herself and doing well and even managed to open her eyes a little bit and give me a massive yawn which just melted our hearts .
Over the next few days we spent all our time in the NICU with Olivia and she was progressing really well, feeds were increasing, she was coming out for cuddles with Mum , me and Caron were getting involved with her care and the doctors were very pleased with he progress . Caron and me both started to feel a lot more confident and at ease that Olivia might actually come through this even though we knew there was still a long way to go.
Unfortunately on day 9 things changed . I was with Olivia early in the morning which I did every morning and she wasn’t herself , she was very agitated and constantly crying which she didn’t really do with being so small . I called over the nurse and noticed her stomach was very distended and a purple/blue colour , it was obvious Olivia was in pain . the doctors were called straight away and things happened so quickly .She was given antibiotics , her feeds were stopped and put onto a ventilator, they did many scans and X-rays and tests and decided the best thing to do was to operate as they thought there was problems with her bowls . No really mention of NEC was made and the doctors seemed very vague , me and Caron didn’t even know what NEC was and how serious it is. Olivia was then prepped for surgery and we both said our good byes and see you soon , we did actually feel better that she was getting the help she needed and would be all good after surgery. How naïve we were.
After an hour or so the nurse came to find us and took us to a side room where the consultant was waiting . this is when we just knew it wasn’t good . She went on to explain that Olivia had got nec and pretty much all of her bowl had died and there was nothing more they could do for her . Our live had been turned upside down in the matter of hours . We was able to hold Olivia and comfort her whilst on the ventilator and eventually she died in our arms on the 31st July 2019.
The thing is that NEC was never really mentioned and how much of a danger it is to premature babies. We had never heard of it until now. I want to help so hopefully parents aren’t in the same position we were in and hopefully make people aware of this horrible condition.
To honour our little Olivia Jane Williams
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