Exclusive:
Penelope Greathead has cardiomyopathy, a condition which enlarges the heart, and ultimately will need a heart transplant, and her parents were told she needed a Berlin heart fitted
The overjoyed parents of a desperately sick baby girl have been given a Christmas ray of hope.
The Mirror told how 14-month-old Penelope Greathead needed a Berlin heart fitted after suffering a cardiac arrest. She has cardiomyopathy, a condition which enlarges the heart, and ultimately will need a heart transplant.
Her worried mum Hollie Suff, 33, and dad Jordan Greathead, 34, were told there was no bed available at either of the two UK specialist centres able to fit the Berlin heart as she clung to life at Leeds Children’s Hospital.
But they travelled to London’s Great Ormond Street (GOSH) hours after the Mirror highlighted their plight. The £126,000 raised in just five days for Penelope to have a mechanical heart fitted privately abroad will now go to charity.
Jordan, 34, a Colour Sgt with the Yorkshire Regiment, said: “It is great news. We are doing a big handover now at Great Ormond Street with all the medical information on Penelope.
“We hope she can have the Berlin heart fitted by the end of the week.” Hollie travelled in an ambulance with Penelope from Leeds to London, while Jordan travelled by car via his military base in Swindon to collect clothes and personal belongings.
They bravely shared their story on Monday to raise awareness so that ‘other babies’ lives were not lost’. His wife Hollie, a Royal Logistics Corps officer, is 23 weeks pregnant; they had kept it secret as a surprise for Penelope. “We just want our little girl alive again,” she said.
The couple told fundraisers: “She is loved beyond measure by her mummy, daddy, and a devoted extended family who adore her cheekiness, infectious smile and the happiness she brings to everyone. Without a Berlin Heart or another solution, she will die.”
An NHS spokesperson described it as an ‘incredibly difficult situation’ for the families, adding: “The expert capacity to support children who are eligible for heart transplants is inextricably linked to the availability of organs following the tragic loss of another child’s life.
“It remains an extremely challenging decision for families to make the life-saving choice to donate their child’s organs following an unimaginable loss. Any child waiting for a heart transplant is assessed individually and prioritised on the basis of clinical need.”
Penelope was diagnosed with cardiomyopathy at just 16 days old after suffering a chest infection. Rushed from Scarborough A&E to Leeds, she was stabilised on medication until the cardiac arrest.
The Dept of Health and Social Care said: “This government inherited a broken NHS and it is totally unacceptable that people, including young children like Penelope, cannot access the care they need, when they need it.
“The £26bn provided for the NHS at the Budget means we can drive improvements across the health service. As part of our 10 Year Health Plan, we’re investing in cutting-edge, specialist technologies to improve access to treatment and drive down waiting times.”
Penelope’s parents urged people to join the organ donor register. Visit www.organdonation.nhs.uk