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Parents worry their four-year-old needs a transplant

The parents of a toddler who survived a life-threatening liver transplant are terrified his four-year-old brother may face the same ordeal.

Laura and Liam Keenan, both 29, from Leeds, watched their 14-month-old son Harry battle through a liver-transplant operation in late August after being diagnosed with a rare disorder, known as inherited Alpha-1 antitrypsin deficiency, which affects just one in up to 4,000 people.

Although the procedure was successful, Harry’s four-year-old brother Max is showing the same symptoms, including bulging veins, which is a sign of poor liver function. 

Doctors have warned Max’s parents he may need his own liver transplant in the future.

Ms Keenan, a primary school teacher, said: ‘It’s definitely a possibility that Max will need a transplant. It is terrifying because it will affect them for the rest of their lives. With a liver transplant they will be immune suppressed and have to take drugs for ever.’

The parents of a toddler who survived a transplant are terrified his brother may face the ordeal

Laura and Liam Keenan watched their 14-month-old son Harry (right) have the operation

Laura and Liam Keenan watched their 14-month-old son Harry (right) have the operation

WHAT IS ALPHA-1 ANTITRYPSIN DEFICIENCY? 

Alpha-1 antitrypsin deficiency (AATD) is a rare genetic disorder that affects one in up to 4,000 people in the UK.

Symptoms usually do not appear until 20 at the earliest, but more often at 40.

Most patients develop chronic obstructive pulmonary disorder (COPD) and experience wheezing, breathlessness and coughing.

Around one in 10 children sufferers have liver problems, leading to scarring and disease.

Treatment generally focuses on improving COPD.

Source: British Lung Foundation 

‘It will affect them for the rest of their lives’

Ms Keenan said: ‘It’s definitely a possibility that Max will need a transplant. It’s very unusual for a child of Harry’s age to need a transplant due to this condition.

‘It normally happens when children are older or even when they become adults.

‘It is terrifying because it will affect them for the rest of their lives. With a liver transplant they will be immune suppressed and have to take drugs for ever.

‘He can live a normal life. He will just have to be extra careful about his health. He could reject the liver at any time.’ 

Mr Keenan added: ‘Max definitely has the same deficiency as Harry, we know that for sure now.

‘What we don’t know is when he will need to have a transplant.

‘It could never happen, but the doctors couldn’t give us a percentage guide or odds or anything like that.

‘Anything could set if off and make him reject the liver, like an infection or even a bad cold – in a sense it could just be a case of bad luck really.’

Needed a transplant at 10 months old 

Max’s younger brother Harry was an apparently healthy baby when he was born in June 2016.

Yet, when he was around nine months old, his stomach became swollen and the veins in his chest started to protrude.

Mr Keenan said: ‘He was a perfectly happy and healthy baby up until that point.

‘But then out of nowhere it was like he just had something new wrong with him each week.

‘After three separate visits to the GP we took him into Leeds General Infirmary.’

Doctors at the hospital initially suspected he had cancer, but later discovered it was life-threatening end-stage liver disease.

Ms Keenan said: ‘The doctor said at some point he would need a transplant.

‘But after he was in hospital for a few weeks they did more tests and realised he was declining quite rapidly so he was put on the transplant list at 10 months old.’

Although successful, Harry's four-year-old brother Max is showing the same symptoms

Although successful, Harry’s four-year-old brother Max is showing the same symptoms

Doctors have warned Max's parents he may need his own liver transplant in the future

Doctors have warned Max’s parents he may need his own liver transplant in the future

‘You know they’re scared and you can’t hold them’

Harry had the eight-hour operation late last month.

Ms Keenan said: ‘The operation was successful and he is doing really well.

‘He is walking about and playing in the isolation room in hospital.

‘We were happy he was getting the transplant, but Harry getting better coincided with someone losing a loved one and it was a tragic day for that family.

‘We feel very grateful for the decision they made because they saved our son’s life and probably other people’s lives as well.’ 

Mr Keenan added: ‘Seeing your small baby in ICU is terrifying when they can’t move but you know they’re scared and you can’t hold them.

‘He just thinks we’re letting people hurt him and that’s horrible to see that in his eyes.’

Harry is still in isolation in hospital as doctors want to ensure he will not reject the new kidney before sending him home.

Mr Keenan said: ‘There’s always a chance of hiccups along the way. That’s why he’s still in hospital.

‘After two or three more weeks he should be able to go home, but he will have to stay in isolation for about three months there too.

‘It all depends on how it goes over the next few weeks.’

Read more at DailyMail.co.uk