Race against time for baby with heart condition due to NHS bed shortage
Video report by Helen Steel
The family of a child who faces a race against time for a new heart - says she could die because of a shortage of NHS beds.
Penelope Greathead was diagnosed with Dilated Cardiomyopathy shortly after birth. She was otherwise happy and healthy - until she suddenly had a cardiac arrest during a ‘routine medicine change’ three weeks ago.
Staff at Leeds Children’s Hospital performed CPR for 12 minutes - and she has been on a life support machine ever since.
Her father Jordan Greathead, 34, said: ‘’You watch how they operate in here. They are like gods, saving lives minute by minute".
Her mother Holly Suff added: ‘’They came out from that room with her toys and I thought she was gone. Then they came back out and said she was back in her rhythm. I just couldn’t believe our little girl was alive again".
The life support machine - known as an ECMO - isn't a long term solution. it's designed to keep Penelope alive until she can have a mechanical heart fitted. It's known as a ‘Berlin Heart’.
But the heart would require a bed in a specialist hospital and there are currently none available in the whole of the UK.
Holly said: ‘’The staff here are phenomenal. This isn’t their fault. This is a funding issue and it sounds like it's such a simple thing to save our little girl's life.
"This is why we want to raise awareness because there are others in this position as well.’’
There are two hospitals - in Newcastle and London - which could provide the right care for Penelope. But currently there are 11 children with a ‘Berlin Heart’ being cared for in those hospitals - and other children waiting for the hearts to be fitted.
All children with one of these hearts are waiting for a heart transplant. A spokesman for NHS England said: "This in an incredibly difficult situation for the families involved and an extremely complex area of care, where 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 a major and 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 and we are continuing to work nationally across the NHS to ensure children and families who are waiting for a heart transplant receive the best possible care at every stage."
Holly and Jordan have now set up a fundraiser in case a bed doesn't become available soon.
The operation could be done in Germany, but the cost of the heart alone is more than £100,000.
They have so far raised thousands pounds thanks to donations from friends from home in Whitby, their colleagues from the army, and the kindness of strangers.
Jordan said: "I can see as I flick through the donations, I can see all the people I work with. It’s so incredible but so hard seeing it.
"We haven’t done loads of research yet. We just wanted the money to be there if we don’t get this bed, so we can get the operation and the right care. If we didn’t for any reason need it, we would of course donate it to the incredible charities which support people like us."
Holly added: "We just want our little girl back. We miss her so much."
Holly is also 23 weeks pregnant. She said: "We need her to be here to become a big sister in April."
The Berlin Heart would keep Penelope going until she finds a heart donor - and the family also wants to raise awareness of the organ donor register.
On the state of the NHS, a government spokesperson said: "As we deliver our Plan for Change, we are taking action to fix our broken NHS and ensure nursing remains an attractive career choice.
"We will unveil a refreshed workforce plan in the summer to provide the health service with much-needed stability and certainty."
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