A distraught dad has revealed that his two-year-old daughter could die because Scotland has none of the specialist heart support machines she desperately needs.
Tiny Fatima D’Souli has been in a medically induced coma for almost two months after her heart stopped suddenly in October.
But the treatment she needs to keep her alive is unavailable in Scotland with only two centres in England offering the support – and none of them have beds available.
Fatima needs a Ventricular Assistive Device (VAD) which helps to pump blood around the body until she can receive a heart transplant.
But only Great Ormond Street Hospital in London and Freeman Hospital in Newcastle can provide the surgery to keep Fatima alive.
She is one of 47 children in the UK currently waiting for a heart transplant with a third of them typically needing a mechanical device fitted first to help them live until a donor is found.
Joe, 55, is desperate for his daughter to get help and has backed calls for the Scottish Government to provide the life-saving treatment for children in Scotland, rather than force families to wait for one of just 12 spaces to become available in either Newcastle or London.
He is joined by Scottish Labour deputy Jackie Baillie and the Liberal Democrat leader Alex Cole-Hamilton in calling for better provision in Scotland for children with heart failure.
The IT consultant from Livingston said: “I’m praying for a New Year miracle.
“Right now they are just telling us that they’re aware of her case, they know how serious it is but at the moment they don’t have any beds available.
“I’m terrified for my daughter and I’m not holding my breath that she will get a place as there are only a handful of beds.
“Frankly I think it’s a disgrace there are so few of these spaces available and there is absolutely nothing in Scotland.”
Fatima has spent the last eight weeks in Glasgow’s Queen Elizabeth hospital in the paediatric intensive care unit after she collapsed at home and her family discovered she had a problem with the left valve in her heart.
Joe said: “She was completely fine, a normal child, until that point.”
The two-year-old, who lives in Morocco with her mum, wasn’t able to get the care she needed abroad and her Scottish dad frantically arranged for her to be transferred to the UK as she has dual citizenship.
After being told she would have to be taken to Newcastle for the VAD surgery last month, the family received another blow when the place reserved for Fatima was taken by another patient in need of urgent care.
Joe said: “About four weeks ago we were told to get ourselves together, we’re going to be moving to the Freeman hospital to get on VAD, it’s all going to be okay.
“I had a sigh of relief, because I thought my daughter’s going to get supported now and she can stay on that VAD for up to two years.
“The next thing we were told it had been taken and we just had to wait again.”
A fortnight ago Joe said he was told his daughter was going to die and medics were going to take her off a life-support machine called ECMO which acts like the heart and lungs for very sick patients.
He said: “We were told she’s not going to get better and she’s going to die.
“They took ECMO off the table, they said that there were no beds, she’s got nowhere to go,
“I’ve had to campaign, speak to doctors, plead with them.
“Now we have ECMO but Fatima is just in a coma, she has to be sedated and I am continuing to fight on, I continue to campaign because the situation is desperate.”
Even if Fatima manages to secure a space in one of the English hospitals, the cost of moving for her family will be significant.
Joe has launched an online fundraiser in preparation for the move but said it would be better for Scottish families if they could be treated at home.
He said: “They’ve only got five beds with VAD in Great Ormond Street and they’ve got seven in Newcastle, so for 60 million people in he UK we have 12 pediatric VAD beds which is absolutely disgusting from my point of view.
“Speaking to doctors here they tell me they’re sending people down all the time to the two hospitals in England.
“There is definitely a need in Scotland.”
Currently there are no specialist paediatric surgeons who perform heart transplants in Scotland with the same specialists required to install VADs.
Labour’s Jackie Baillie said: “This is a heartbreaking story and my best wishes are with Fatima and her parents.
“NHS England have a long history of providing specialist services for patients in Scotland which is welcome and we should seek more opportunities to work together in the interests of patients.
“Given the demand for this specialist service, NHS Scotland should review whether we should have the capability to deliver VAD treatments here, adding to the capacity across the UK to treat children needing life-saving transplants.”
Lib Dem leader Cole-Hamilton said: “At this time of year, Fatima and her family should not be left in limbo over treatment whilst going through something so upsetting for all of them. My thoughts are with them, and other families who may be going through something similar.”
A Scottish Government spokeswoman said: “We are keen to ensure that all people requiring treatment and urgent procedures receive high-quality care in a safe, effective manner.
“Where it is not possible to provide this in a healthcare setting in Scotland, NHS National Services Scotland (NSS), will work with NHS England and other devolved health boards to ensure the patient receives treatment in an appropriate setting.”
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