The parents of a desperately ill baby girl told how Christmas ‘had come early’ after a heart op gave her a vital lifeline.
Penelope Greathead needed a mechanical Berlin heart fitted after suffering a cardiac arrest. She has dilated 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) after the Mirror highlighted their plight last week. Fourteen-month-old Penelope was fitted with the mechanical device to keep her alive on Dec 20th.
Fourteen-month-old Penelope Greathead suffered a cardiac arrest
Jordan, a Colour Sgt with the Yorkshire Regiment, said: “It has taken a long time to get here, but it is a step in the right direction. We know it is going to be a long road ahead now. The operation took six and a half hours.
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“We went for a walk around London to keep ourselves busy. Our next big challenge will be to wean her off the sedation. She is asleep most of the time but sees us when she wakes for short periods.”
He added: “I like to think our story started a conversation. We were anxious that we did not appear angry. We did not have a bad word to say about the NHS. The doctors and nurses do an unbelievable job. We were put in a position where there was nothing we could do but raise awareness.”
Penelope had previously been on life support in Leeds, before a bed was found for her in London
Penelope had previously been on life support in Leeds, before a bed was found for her in London. The couple received £130,000 in donations to have the Berlin heart fitted privately abroad, after posting about Penelope’s urgent need for help.
That money will now go to Penelope’s Little Heart Foundation, which they will set up to help other families in the same situation. “We had so many messages from people all over the world and we’re immensely touched,” added Jordan.
Penelope could be on the waiting list for up to two years and will now stay in Great Ormond Street. 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 16 days old after suffering a chest infection. Rushed from Scarborough A&E to Leeds, she was stabilised on medication there 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
