Little Callan was dying – until his dad saved his life with a liver transplant

Callan Price. Picture: Sonya Duncan Archant 2019

Little Callan was dying – until his dad saved his life with a liver transplant

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Callan Price had a liver transplant from his dad, Matt. Callan is pictured here with brothers Tom and Ronnie and mum Jen. Byline: Sonya Duncan Callan Price had a liver transplant from his dad, Matt. Callan is pictured here with brothers Tom and Ronnie and mum Jen. Byline: Sonya Duncan

Every day with Callan is a blessing for his parents, Matt and Jen Price, and big brothers Ronnie and Tom.

He laughs as his brothers race around entertaining him, he loves nursery rhymes and trying to keep up with his brothers as they all do the actions, he likes bathtime and books and going to the park and playing on the swings - but 16-month-old Callan is only here because, working away inside him, is a piece of Matt's liver.

Callan was born in April last year and at first all seemed well, but within 40 minutes he was breathing in grunts. Doctors at the Norfolk and Norwich University Hospital suspected fluid on the lungs and he was taken to the neonatal intensive care unit.

Tests were run but by four days old, Callan was in a coma, gravely ill, and no-one knew why.

Callan Price had to have a liver transplant from a donation made by his dad, Matt. Pictured here with brothers Tom and Ronnie Byline: Sonya Duncan Copyright: Archant 2019 Callan Price had to have a liver transplant from a donation made by his dad, Matt. Pictured here with brothers Tom and Ronnie Byline: Sonya Duncan Copyright: Archant 2019

Matt and Jen, of Mulbarton, were warned to hope for the best but prepare for the worst.

Doctors at the Norfolk and Norwich University Hospital suspected a metabolic condition. They were right. Callan lacked a vital enzyme in his liver. His tiny body was being poisoned by proteins which should have been broken down but continued circulating in his blood.

Doctors spent a night stabilising him ahead of an emergency transfer to a specialist unit in St Thomas Hospital, London.

"I think the scariest time may have been the transfer to London and all that medical care happening in the ambulance and Callan being heavily supported with adrenaline to try and get him through the journey," said 39-year-old Matt. "As soon as we arrived at the Evelina I knew we were in the right place for Callan with a team of 10 people waiting to take care of him, it was truly overwhelming.

"He was wired up to many machines which monitored him and administered medication alongside a blood dialysis machine which cleansed his blood of the ammonia that had built up as a by-product of not being able to break down protein. They were also making special meals for him in the lab and balancing all his medications based on results from six hourly blood tests. The technology and care was amazing."

Callan was in a coma for four days and in intensive care for another 10 days. Jen, 36, said: "I remember just touching his hand and he responded immediately and looked at me."

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After they returned to Norfolk with Callan on an intense regime of medication and very strict diet, it became clear that a liver transplant was his only hope. Aged just five months, Callan was placed on the transplant list. If no liver was found he would die within months.

Matt wondered whether he could donate part of his liver, rather than waiting to find out whether a donor organ from a baby would become available. "Initially I was told I needed to lose some weight, lower my cholesterol and get fitter so I began exercising and was put through a series of very thorough assessments at King's." said Matt.

By November he had lost almost two stone was ready to donate - but Callan was not yet big enough for the operation. There were also fears his condition would deteriorate and he would not be strong enough to survive surgery.

By December he was in and out of the Norfolk and Norwich Hospital. It was decided he should be admitted to hospital in London until either a suitable donor liver became available, or the living donor operation, from Matt to Callan, could be carried out.

There were heartbreaking conversations about whether treatment should continue and Matt said: "The urgency for transplant was increasing due to the high levels of ammonia and the likeliness of causing brain damage." Then the family were told Matt and Callan could undergo the double operation at King's College Hospital, London, on February 1.

Matt's surgery lasted six hours, followed by two days in intensive care and another four in hospital. "Apparently, my liver has a slightly unusual structure which meant the surgical team had to rethink their plan on the spot to ensure they had the right ducts and blood vessels for the transplant," said Matt. "I was told the liver has several lobes which would regenerate after the transplant and they took about 20 per cent of the liver for Callan." Callan's surgery took 10 hours, followed by three weeks in hospital.

Finally, towards the end of February, he was home.

There are still frequent appointments at the Norfolk and Norwich, and in London, and Callan will always be at greater risk of infection because of the medication to prevent rejection of the new organ, but Jen said: "Family life has started to become more normal." And she and Matt are hugely grateful for everything that has been done for Callan.

"We are so humbled by the amazing care we have received across the three NHS hospitals and ultimately with the transplant. We were the lucky ones, ones with the option of a living donor," said Matt. "We knew virtually nothing of the world of organ donation until we were thrust into it 16 months ago. Now our family members are all signed up for organ donation and we regularly promote it on social media."

Jen said: "No-one wants to think about their own death, let alone that of a child but I would urge everyone to please consider organ donation and believe that if you would accept an organ for you or your child then you should be prepared to offer them too. It really can change so many lives for the good. Having faced the very real possibility of having to say goodbye to our little boy and having being given the chance to consider offering his organs for donation we can fully appreciate the enormity of this decision and how emotions and grief can cloud your thoughts. But having had time to consider we came to the realisation that organ donation truly is the only positive to come from the death of a loved one."