Whitby girl fitted with 'Berlin Heart' could face two-year wait for organ

• Video report by Helen Steel.

The parents of a girl who is being kept alive by a mechanical heart say they face a potential two-year wait for the transplant that would allow her to live a normal life.

Fifteen-month-old Penelope Greathead, from Whitby, North Yorkshire, was taken to Great Ormond Street Hospital in London last month to have a so-called "Berlin Heart" fitted.

The machine is required to do the work of her heart after she suffered a cardiac arrest in November.

But Penelope, who was born with a condition called dilated cardiomyopathy, is now waiting for a donor of a similar age and size to provide the heart she needs. She will be confined to a hospital bed until an organ becomes available.

Her dad, Jordan, said: "She needs to recover from the operation that she's had and be stable on the Berlin Heart. And then from there it's [a case of] waiting for the phone call to say there's an organ available."

Penelope's mum Hollie Suff added: "Even though Penelope is on a Berlin Heart and it's a fantastic device, there's still a lot of risks that go along with it. There's a high risk of clotting that could potentially lead to a stroke, there's an infection risk. We're still on edge a lot and we've been told we could wait up to two years for a transplant."

Despite being diagnosed with her heart condition shortly after she was born, Penelope was otherwise healthy until she suffered a cardiac arrest during a routine medicine change.

She was on life support at Leeds Children Hospital while her family waited for a place at Great Ormond Street.

More than £125,000 was raised after a campaign was launched to pay for a Berlin Heart privately. The money will now go to charity.

Jordan said she had responded well to the treatment. He said: "The issue we have at the moment is that because she's been on so much sedation for so long she's dependent on it and they're trying to wean it down slowly. But the last couple of days she's been really good with it and she's coping with it really well."

There are five children currently fitted with Berlin Hearts at Great Ormond Street.

Almost 40 children in the UK are waiting for a heart transplant.

Paediatric cardiologist Dr Matthew Fenton said: "The amount of time that we need to support children in order to be transplanted has increased significantly from a few moths to a year-and-a-half or so, which is a long time for children to be waiting in a bed space on the high dependency unit."

Penelope's family are now appealing for people to join the donor register.

Hollie said: "Even though we had a baby with a heart condition, we never considered organ donation for our child. Now we're in this world we can see the huge benefit it could provide to other families, giving other families a chance."

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