‘Please, please do it’ - mother urges families to consider organ donation after transplant saves her daughter’s life

Video report by Andrew Misra

A mother from County Durham is urging other families to talk about organ donation - a year after an emergency heart transplant saved her daughter’s life.

When Kayleigh Llewellyn, from Seaham, first complained of chest pains after football training last year, her parents thought it was caused by her asthma. Soon after, her mother Sonia was left fearing for her daughter’s life.

Her daughter’s heart rate had reached 208 beats per minute and tests at the Freeman Hospital in Newcastle showed that her heart was only working at 8%.

Sonia said: “For the ten weeks she was in paediatric intensive care, we didn’t know if she would make it to the end of the day or not.” 

Kayleigh was diagnosed with cardiomyopathy, a condition that affects the heart’s ability to pump blood around the body. After ten days on the waiting list, she had an emergency heart transplant.

Kayleigh with her mother Sonia and father Shaun

A year on, Kayleigh is back playing football - to her own amazement.

She said: “I used to not be able to walk or lift my own head so I thought that being back to football would be impossible. Some nights I thought I would go to sleep and not wake up the next day.

The latest data from NHS Blood and Transplant shows that there are:

At the height of the first lockdown in April, transplants across the UK from deceased donors fell to their lowest level in 36 years - down by 191 compared to the same time last year.

Although numbers recovered to pre-Covid levels in the summer - with August’s figure 30 higher than the year before - they fell again last month with 101 fewer transplants than October 2019, as coronavirus cases rose once more.

Philip Seeley was part of the team that looked after Kayleigh when she was in hospital.

After the first lockdown, he says the transplant team at the Cardiothoracic Centre at the Freeman Hospital are better prepared this time around - but stresses the critical need for donors.

He said: “It’s exceptionally important that people continue to donate, it’s a gift that can never be repaid in some respects but it is a gift that will save people’s lives. It is ultimately the gift of life.”

Philip Seeley and Kayleigh at the Freeman Hospital in 2019

A new law introduced by the government in May means that most adults now have to opt out of organ donation.

Max and Keira’s law sees a shift to the opt-out system, whereby those aged 18 and over are deemed to have given consent to donate their own organs when they die, unless they explicitly state otherwise or are in an excluded group.

Kayleigh’s Mum, however, is urging other parents to talk about donation for all members of the family. 

Sonia said: “Please, please have a serious think about it because we never thought anything like this would happen to Kayleigh and us as a family.

Kayleigh now has her sights set on competing at the World Transplant Games - which came to Newcastle and Gateshead last year.

After spending last Christmas in hospital, now the family is looking forward to being together at home over the festive period - something Sonia wouldn’t have dared to dream of twelve months ago.

She said: “it means the world, she’s my best friend and we’re obviously like really close relationship. I just don’t know what I would do without her.”

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