Parents have thanked doctors who saved their son from a very rare blood condition which kills nine out of 10 patients.
Hamza Rawat, from Blackburn, was kept alive by specialists in Liverpool during two weeks in intensive care, and is now one of just 25 people in the UK being treated with a specially-funded drug to supress his immune system.
The 22-year-old suffers from cerebral palsy and learning difficulties and had suddenly become ill with a high temperature and vomiting. After four days at the Royal Blackburn Hospital, doctors suspected he had thrombotic thrombocytopenic purpura (TTP), which causes clots in the blood vessels, so he was urgently transferred to a specialist department at the Royal Liverpool University Hospital.
The only treatment for TTP is plasma exchange – the replacement of a patient’s circulating blood with fresh plasma - which has just a 10 per cent survival rate.
It is so rare that the symptoms, including hallucinations, jaundiced skin or headaches, can often be mistaken for less serious illnesses.
But recognising the severity of Hamza’s condition, doctors at the Royal Liverpool admitted him to intensive care where he received daily plasma exchanges.
He was also put on a ventilator after developing breathing difficulties and given dialysis due to kidney failure.
Mum Habiba, 42, of Whalley Range, said: “Day and night I was thinking I’m not going to see him again, this is the end. I fainted myself looking at him and ended up in the emergency department. I was there but my mind wasn’t working.
“The doctors tried very, very hard to bring him back from where he was and staff looked after us really well.
“Every second day they were doing six hours of dialysis to take fluid out of his body.”
Habiba and her husband Mohammed took turns to keep vigil by Hamza’s bedside 24-hours-a-day, and gradually his blood counts improved and he was taken off the ventilator.
Hamza, a former pupil at Newfield School in Old Bank Lane, was eventually diagnosed with atypical haemolytic uraemic syndrome (AHUS), which is in the same spectrum as TTP and relates to the kidneys.
He was discharged from Royal Liverpool seven weeks after being admitted and now receives dialysis treatment three times a week at home, as well as fortnightly infusions of Eculizumab.
The antibody drug works by blocking the activity of the part of the immune system that can cause clots to form.
He must now regularly make the 40 mile round trip to Liverpool for check-ups but his family saidthey would not want him to be treated elsewhere as they have such faith in the team.
Habiba said: “The whole thing came completely out of the blue. He’s been disabled from childhood and we’ve never left him alone, but this was really really hard to deal with.
“If he becomes unwell or starts bleeding again from his nose, we have been told we should take him straight to hospital.”
Mohammed, 44, said: “It was a very hard time but thanks to all the doctors and nurses we never felt we were in a different town.”
The Royal Liverpool is the North West’s regional centre for TTP, with one of only two blood and transplant units able to perform plasma exchange at short notice.
Dr Tina Dutt, a consultant haematologist who set up the service with her colleagues, said the condition was unpredictable and can affect people of any age.
She said: “If a team has been involved in a case of TTP they never forget it. Patients need prompt diagnosis and management to have the maximum chances of survival.
“Patients and hospital staff may not realise how critically unwell they are when they come in. Everyone knows if you have a stroke, you’ve got to get to hospital. But the symptoms of TTP are less well known. The fear is that patients can deteriorate rapidly within minutes.
“The underlying cause is complex and trying to explain this to the patient and relatives is very difficult in the emergency situation.
“If patients survive, because they often go through a near death experience, many have post-traumatic stress. The conditions are long term – they have a chance of relapse so patients must look out for signs.”
TTP can be triggered by infection or a virus and in many cases you can be born with it, but symptoms only show themselves later in life.