Girl with mechanical heart faces transplant wait

Penelope, pictured after the Berlin Heart was fitted, is now "lovely and warm" following the op, her dad says

The parents of a 16-month-old girl who is being kept alive thanks to a mechanical heart pump have said they face an unknown wait before she can undergo a life-saving organ transplant.

Penelope Greathead, from Ravenscar, North Yorkshire, suffers from dilated cardiomyopathy and has been at Great Ormond Street Hospital in London since having a cardiac arrest last November.

Her family said Penelope's health had been "transformed" after she was fitted with a device known as a Berlin Heart, but she could not return home until she had received a new heart.

Penelope's dad Jordan Greathead said: "They just can't tell us when that phone call will come. It could be in two hours time, or two years."

Mr Greathead said he and Penelope's mum Hollie Suff, who is 33 weeks pregnant, were staying in a hotel in London to be near their daughter while they continued to wait.

Mr Greathead, 34, said the improvement in Penelope since having the device fitted had been amazing and her development had come on in "leaps and bounds".

Prior to the procedure to fit the Berlin Heart, Penelope had struggled to put on weight and looked poorly, he said.

"One of the transplant doctors said if it was an adult, they'd be telling you how bad they felt," Mr Greathead explained.

"They'd be out of breath and wouldn't want to do anything - but babies can't do that.

"Penelope seemed miserable and she used to have really cold hands and feet because her heart wasn't pumping well enough.

"But now she's got this device, it's like having Usain Bolt's heart."

Mr Greathead said Penelope was now "lovely and warm, having lovely long sleeps, her hair is growing crazy, and she's putting weight on every day".

"It's like she's a completely different child and we've been given a glimpse into the kind of life she should be living," he added.

Penelope's parents are staying in a hotel near Great Ormond Street Hospital while they wait for news about a transplant

According to figures from NHS Blood and Transplant, there are currently 319 people in the UK waiting for a heart transplant - 49 of which are children.

The service said for non-urgent child patients, the average wait time was about two years and two months, while it was about 109 days for urgent cases.

A spokesperson said: "For many children on the transplant waiting list, their only hope is the parents of another child saying 'yes' to organ donation at a time of immense sadness and personal grief.

"We urge parents to think and talk about organ donation for themselves and their children today. Your decision could help save lives."

Mr Greathead, who along with his wife had been given time off from their work in the Army, said although life was on hold until Penelope received a transplant, they were coping by taking each day at a time.

"You've got to look at the positives, you can't look too far ahead," he said.

"The doctors can't give us a timescale on surgery. They told us the average wait for a heart transplant is about 18 months."

Mr Greathead, who is also raising awareness of the importance of organ donation, said he and his wife had been given medical training which meant they would be able to take Penelope outside the hospital for the first time in months.

"It will be great to let her see things outside the hospital. A visit to the park will be nice.

"But at the minute, all she wants to see is the London pigeons, so maybe we'll start with that."

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