Mum of baby who needs liver transplant urges organ donation discussion

Dylan Serrano Ramirez was diagnosed with Biliary Atresia, a blockage in the tubes that carry bile from the liver to the gallbladder, when he was just nine-weeks-old.

His mother, Nelitza Ramirez Serrano, described the heart breaking moment when doctors told her and her husband, Manuel, that their baby boy would need life-saving surgery.

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She said: “When Dylan was born he was like any other healthy baby boy but sadly he picked up an infection in the first month of his life.

“After undergoing several tests we were told he was diagnosed with Biliary Atresia, which led to Dylan needing to have an operation to save his life – I couldn’t believe my baby boy who was so small had to endure such a big operation.

“Luckily he survived but the damage the infection has caused now means he needs a liver transplant or he may only survive for a number of months.”

Seven-month-old Dylan who is waiting for a transplant.

Neli, who is a Critical Care Nurse at Ysbyty Gwynedd, works closely with the Health Board’s Specialist Organ Donation Nurses in her day-to-day job and has witnessed those difficult end of life conversations with families around organ donation.

“This year’s Organ Donation Week is particularly important to me; it’s a week that celebrates the gift of life.

“By sharing my story I hope to raise awareness of the difference organ donation can make to someone and their families, like my own family.

“Dylan will soon be joining the transplant waiting list – I want him to have a second chance at life and be the healthy and happy baby we first met seven months ago.

“Every day across the UK there are thousands of patients and their families, waiting for that all important lifesaving call and we will soon be one of them. Yet, this is often only possible as a result of another family receiving some of the hardest news they might ever have to hear.

“Our sad situation has really brought home the importance of organ donation so I urge all family members of all ages to take a moment this awareness week to register and share your decision with your family,” added Neli.

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To mark the start of the awareness week the gothic Marble Church in Bodelwyddan was lit up in pink and saw members of staff, families of those who have provided the gift of life and those still waiting for a transplant gathered to watch the emotional switch on.

The church will light up again on Sunday, October 2, between 7pm – 10pm to mark the end of the awareness week.

Abi Roberts, Specialist Nurse in Organ Donation with Neli outside the Marble Church.

Abi Roberts, Specialist Nurse in Organ Donation, said: “We were delighted to see our colleagues and families of donors and those who are still waiting for transplants gather outside the Marble Church at the start of this awareness week.

“It was incredibly emotional to see family members of donors take that special moment to remember their loved ones.

“The main message we want to get across this week is how important it is to speak to your family members about organ donation.

“It’s really important that families know their loved ones’ wishes to give them the certainty to support their decision at such a difficult time.

“Organ donation is a very personal decision, it can never minimise the grief of a bereaved family but can lead to the lives of others and their families, such as Neli’s.”

To find out more and register your decision, visit the NHS Organ Donor Register at www.organdonation.nhs.uk and share your decision with your family. Users of the NHS app, can also use this to record, check or amend their details or decision.