Parents of Carter Cookson in organ donor plea after tragic death of South Shields' newborn

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The parents of Carter Cookson have spoken of the importance of organ donation, the one thing that would have kept their son with them, after an inquest found an unknown and catastrophic event caused irreparable damage to the newborn’s heart.

Sarah and Chris Cookson, of South Shields, spoke of their heartache as they relived the loss of their second little boy Carter John Cookson at an inquest into his death– and urged people to have the conversation about signing up to donate their organs.

Carter was born on Boxing Day last year and died at just three weeks old after a unknown, “sudden and catastrophic event” caused severe damage to his heart meaning he would only have survived with a transplant.

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It was the second tragedy the couple have faced after losing their first child, Charlie, at the age of just two to a mystery health condition.

Chris and Sarah Cookson outside the Coroner's Court. Inset: Baby Carter CooksonChris and Sarah Cookson outside the Coroner's Court. Inset: Baby Carter Cookson
Chris and Sarah Cookson outside the Coroner's Court. Inset: Baby Carter Cookson

Now they are keeping their boys’ legacy alive by campaigning for more people to sign up for organ donation – as well as continuing to help the families of children with life-limiting conditions.

After the inquest hearing, Sarah said: “The only hope he did have was a new heart and of course we did everything we could to try and get him that with the awareness that we did.

“We did feel like that was really hard to do because it would mean another child would to have to die.

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“And all we could do was put it across that two didn’t have to die – one could survive.”

Carter Cookson needed a heart transplant to surviveCarter Cookson needed a heart transplant to survive
Carter Cookson needed a heart transplant to survive

Unfortunately, both Charlie and Carter’s organs were too damaged to be donate to help another child survive, but Sarah and Chris want to show just how important it is.

Sarah said: “It is the gift of life at the end of the day.

“That is all that would have saved our little boy. I do hope there are babies that could receive an organ because of our Carter.”

Chris added: “Listening to what was said in there, knowing that when we were going through it there were reasons why we were never going to win.

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Sarah Cookson cuddles her newborn son CarterSarah Cookson cuddles her newborn son Carter
Sarah Cookson cuddles her newborn son Carter

“I would honestly say now if I was back there again and I was given that information we still would have fought.

“We would never have give up on him, and even though we might have known that part of his lungs, heart and kidneys weren’t working at all, we still would have fought until his last breath to find him a heart – that will never change.

“We can only hope he’s up playing with his brother now.

“I think we hope Charlie and Carter are both together.

Charlie Cookson, Carter's older brother who died aged two.Charlie Cookson, Carter's older brother who died aged two.
Charlie Cookson, Carter's older brother who died aged two.

“Me and Sarah say now it looks like our job wasn’t to have kids and bring them up, we were meant to have two children who will help save other babies lives and I think that’s the way things are working out now.”

The couple have also thanked the staff at Freeman’s Hospital who gave them a little more time with their son – enabling them to create some memories.

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The inquest, which was held at Newcastle Civic Centre yesterday, heard how doctors and a pathologist were unable to determine what had caused the damage to Carter’s heart.

Dr Fraser Charlton, a consultant pathologist, said the pattern of the damage was unlike anything he had seen before.

Dr Fraser said: “Carter would not have been able to recover, his only option would have been a transplantation – which is very difficult and a rare occurrence in children of that size for organs to become available.

“If the ECMO [life support] machine hadn’t been used I don’t think Carter would have survived as long as he did.”

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Through all the scans during Sarah’s pregnancy there were no issues of concern Carter’s heart – although on the last scan at 35 weeks doctors were concerned about his size.

He was born by an emergency C-Section, but just 12 hours after being born, Carter became pale, his heart rate was low and he was struggling to breath.

“He was transferred to the neonatal intensive care ward where he was incubated and ventilated.

Dr Yamunu Thiru, a paediatric consultant in critical care, said despite a number of tests which took place at Freeman’s Hospital, in Newcastle, doctors were unable to determine what had caused the damage to his heart.

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The parents say they will be forever grateful for the care Carter received, but “there will always be a thought in the back of their mind as to whether more could be done”.

Sarah says the only memory she has of Carter is when he was getting poorly, and wonders if she had not been coming round from the anaesthetic her mother’s instinct may have kicked in.

Concluding, senior coroner Karen Dilks said: “The sequence of events that led to Carter’s death were that he had a sudden, catastrophic event that led to severe damage to his heart.

“That was in combination with some complication with ECMO – that actually prolonged his life on the one hand but contributed on the other – was the reason he died when he did.

“There is no conclusion available to me, but that it was a natural occurring event.”

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