Lyndsey Kociuba Treasurer

Ollie's Story

Hi I'm Lyndsey, I'm one of NEC UK’s Charity Trustees. On 10th May 2015 I gave birth to my beautiful twin boys, Charlie & Ollie at 32 weeks gestation. They were 3lb 4oz and 3lb 14oz.

We knew Ollie had a tough road ahead as he was diagnosed prenatally with pulmonary atresia, meaning only half of his heart was working. When they were born they were both breathing on their own which was really positive. Doctors were hopeful that it was just a matter of getting Ollie big enough for surgery. Ollie needed lots of medication to keep blood flowing through his heart until his surgery, this meant he was very sleepy a lot of the time. On day 9 we were delighted to see that the boys had been moved into a cot together, it was so amazing and a good sign! By 11am however, Ollie became really distressed after his feed, and again after his 1pm feed. We didn't know what was happening and staff didn't seem too concerned. By 7pm that evening his temperature was very low and he had an X-ray which confirmed NEC. He was put on a ventilator and his bowel was rested. We were told he was being treated with antibiotics but we weren't too worried as he'd had an infection before and it cleared up quickly, I feel that we were quite naive about it at the time. He seemed to be quite settled that evening, however by midnight they were doing CPR as he crashed. Very sadly his little heart just couldn't take it anymore and the emergency team couldn’t bring him back.

I see Ollie in his twin brother Charlie every day, he has turned four this year and I still think of Ollie every minute. If I can help one person then Ollie's death will not have been in vain. Please feel free to contact me if you have any questions or just want a chat.

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X Lyndsey X