'In the blink of an eye, our lives changed forever': Dad on 5th anniversary of daughter's heart transplant

Five years ago, Kayleigh Llewellyn was a 12 year old girl battling for life.

‘We must have been told a dozen times to prepare for the worst’

She had been training in a school football session the night before she took ill, and then went home to spend time on her Xbox.

But by the next morning, she had become unwell and was struggling to breathe.

It happened overnight, said her dad Shaun Sidney, from Seaham. “Since then, we must have been told a dozen times to prepare for the worst.”

Kayleigh’s heart rate was too high and she was sent to the Freeman Hospital in Newcastle.

‘It felt like there was no light at the end of the tunnel’

She was diagnosed with cardiomyopathy which is a form of heart disease.

The weeks and months which followed were an emotional roller coaster. A first donor heart which was suggested for Kayleigh did not work.

“It felt like there was no light at the end of the tunnel,” said Shaun.

Placed on the urgent transplant list

Kayleigh 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 of her heart was linked to an ECMO machine.

After four weeks in intensive care, Kayleigh’s condition wasn’t improving and she was placed onto the urgent transplant list for a new heart in November, 2019.

“It wasn’t just about Kayleigh being poorly,” said Shaun. “People don’t realise the darker side of it all. I had a son at home who was 19 at the time and he was living alone.”

In the months that followed, he stopped working and was on sick pay.

Kayleigh’s mum Sonia also had to stop work and the finances became so worrisome, that the family almost lost their home.

A new era at last

But in November 2019, the beginning of a new era began.

Kayleigh had her transplant that day but only came home in January 2020 after 102 days in hospital.

She will remember the fifth anniversary of her operation in her own way.

Kayleigh will place flowers next to the memorial tree that has been set up in Seaham in memory of Sinead Bree - the 19-year-old whose heart Kayleigh now has.

She will also spend time on social media, raising awareness of the importance of organ donation.

Eternally grateful to the donor family

Shaun added: “It is unreal to think that five years have passed. Where has it gone?

“In the blink of an eye, Kayleigh is coming up for 18 and she has packed so much into the time since the transplant.”

Kayleigh is studying health and social care at college, with a view to eventually saving the lives of others.

She is also learning to drive and informs people about the importance of organ donation through her Instagram page.

Find out more about organ donation

“Our lives have been totally turned round as well,” said Shaun. “I have got a really good job, Sonia is a teacher and we are hoping to move into a brand new house by Christmas.”

Kayleigh has health checks every 12 weeks and has to ring the doctor every eight weeks to keep a progress report on her health.

She is doing well and it is all down to the family of Sinead who took the decision to donate her heart.

“We are eternally grateful to the donor family. Without them, Kayleigh would not be here today,” said Shaun.

For more on organ donation, visit https://www.organdonation.nhs.uk/