The heartbroken parents of a baby boy have revealed how their "little fighter" died at seven weeks battling a devastating condition.
Harley Robert Kennedy was born 16 weeks early, weighing 1lb and 6oz, and spent the next seven weeks defying the odds and surviving three operations at Newcastle's Royal Victoria Infirmary.
He was moved from James Cook Hospital in Middlesbrough and was diagnosed with necrotising enterocolitis (NEC) - a serious condition that can affect newborn babies where tissue in the bowel, small and large intestines becomes inflamed.
Harley sadly died in the arms of his mums Missy and Nicole Kennedy, TeesideLive reports.
Missy, 22, said: "We were told he wouldn't be able to open his eyes but he did and they stayed open through everything.
"He went through so much and he really was a little fighter. He brought our whole family together."
Harley's heart stopped moments after he was born on January 31.
Doctors were able to bring him back to life and rushed him to intensive where he was placed in an incubator before being put on a CPAP machine.
Harley's parents had to wait 12 days before he was strong enough to be held.
Due to Covid restrictions, they were only able to see him for two hours every day.
Harley was born at 24 weeks, but Missy's water had broken three earlier, which was missed by doctors - meaning the baby didn't have extra time for his organs to develop.
And at two weeks old the "little warrior" took a turn for the worse when his kidneys were failing and doctors had discovered an infection in his stomach that they didn't think he would survive.
Missy said: "The day after we held him for the first time he got really poorly, the feeding tube had moved and caused a bleed on his lung. Doctors were trying to correct that and a stomach infection he was fighting.
"His kidneys were failing and he hadn't had a wee in almost 22 hours so he was put on an oscillator (which delivers breaths much faster than a conventional ventilator).
"At this point, he had suspected NEC but they didn't think he would recover from the stomach infection.
"They really didn't think he was going to make it so we had him christened and our families were allowed in for the first time to meet him.
"It was heartbreaking to think that was the first and last time our family would meet our little boy.
"But he kept fighting and he was well enough to be transferred to Newcastle's RVI."
It was there Harley was diagnosed with NEC and at just four weeks old, he had his first operation.
Doctors removed his small intestines and three-quarters of his bowel and gave him a stoma but one week later scans showed further leaks in his bowel and Harley needed a second surgery.
Harley was rush for an emergency operation where surgeons disconnected his whole bowel due to nine leaks.
Further scans showed he had brain damage but it wasn't clear how much it would affect him.
Harley then had a fluid build-up in his tiny body and he began to "swell like a balloon".
Almost three weeks after his last surgery he wasn't showing any signs of recovery.
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Nicole, 20, said: "He was put on adrenaline for extra time but the consultant said, and I’ll never forget those words, ‘we’re not helping him anymore we’re killing him'."
At seven weeks old, on March 25, Harley passed away peacefully in his mums' arms.
A balloon release was held in memory of the little boy and the devoted parents say they have been overwhelmed by the support of their friends, family and the Darlington community.
More than £600 was raised to support Missy and her wife Nicole following the tragic loss.
Now the couple want to tell Harley's story to raise awareness of NEC - a condition that doctors still don't know the cause of.
Missy said: "We wish we'd known more about NEC beforehand, it affects 10% of premature babies but doctors still don't know a lot about it.
"It's almost as if Harley's still here, there's not a day that we don't speak about him, he is and will always be so important to us.
"They all loved him at the hospital. They gave him the nickname of little warrior on the ward. He was the baby who just kept on fighting.
Nicole, 20, added: "He really did the best he could. We were always looking forward to bringing him home and getting out of the hospital but if I could go back to the hospital for one day despite all the heartbreak I 100% would if I could.
"It was hard being just 19 and 21 but I feel like we did everything we could with him for seven weeks.
"Through everything, he still brought so much joy."
