Family of youngster, 12, who was given given gift of life after heart transplant welcomes 'opt out' donor law change

The Government has announced that Max and Keira’s Law – the Organ Donation (Deemed Consent) Act – will come into effect on May 20, subject to parliamentary approval.

It will mean that adults in England will be considered as having agreed to donate their organs when they die unless they record a decision not to donate, known as ‘opt out’, or are in one of the excluded groups.

Excluded include people under 18 and those who lack the mental capacity to understand the new arrangements.

Even after the law changes, families will still be involved before any organ donation goes ahead and NHS Blood and Transplant Specialist Nurses will continue to speak with families about their loved one’s decision.

Kayleigh Llewellyn, 12, from Seaham, knows firsthand the life-saving impact organ donation has, having undergone a heart transplant at Newcastle’s Freeman Hospital late last year.

The Seaham High School pupil had become unwell suddenly, after waking up struggling to breathe.

Parents Shaun Sidney and Sonia Llewellyn thought it was asthma, but when Kayleigh woke up the following day with a sore chest they took her to Sunderland Royal Hospital.

There, medics found that Kayleigh’s heart rate was too high and she was sent to the Freeman Hospital’s Children’s Heart Unit (CHUF) for tests.

Kayleigh was diagnosed with cardiomyopathy – a type of heart disease – and doctors told the family that she needed a heart transplant.

She was taken to the High Dependency Unit and underwent surgery for a VAD Pump to be fitted on the left side of her heart, while the right side was linked to an ECMO machine.

After four weeks in intensive care, Kayleigh was placed onto the urgent transplant list for a new heart.

Kayleigh underwent surgery to have a Berlin Heart fitted, but just days later a heart became available and she was rushed back to theatre to undergo the transplant.

Since then Kayleigh has been going from strength to strength and on January 12 she was able to return to her home on Earl Street, Seaham.

Now she is on a mission to raise awareness of organ donation.

And the news that the new law could come into effect is something her family have hailed as ‘amazing.’

Dad Shaun said: “It is absolutely amazing, because that is one of the things we are pushing for.

“So for the Government to possibly bringing in a new law on organ donation is a massive milestone.

“It will make such a difference and it’s amazing to think how many lives it could save by the spring.

“Kayleigh will be jumping through hoops to hear about the law – she is really passionate about organ donation and raising awareness, so she will be over the moon.”

To find out more visit: www.organdonation.nhs.uk