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High mortality rate among young liver patients highlights importance of living donors

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07 June 2018

Twenty percent of the patients under six months of age with a rare liver condition known as biliary atresia and serious liver damage on the waiting list for a liver transplant between 2001 and 2014, died before a suitable donor organ could be found. This has been revealed by research carried out by paediatrician Hubert van der Doef from the University Medical Center Groningen. He has published an article on his research in the medical journal Liver Transplantation. His research highlights the importance of living donations, a relatively new procedure in which a healthy person, often a parent, donates part of his or her liver to be transplanted into the child.

Biliary atresia is a rare condition that develops shortly after birth. The bile ducts of children with biliary atresia are not properly formed or can even be totally blocked. As a result, bile from the liver cannot reach the intestines and pools in the liver where it causes serious damage. 

As children with biliary atresia are unable to digest nutrients, they do not thrive, can become malnourished and develop jaundice. An operation using what is known as the Kasai method is performed on all these young patients. The procedure involves creating a new bile duct between the liver and the gut using a section of the small intestine. 

This procedure is enough to reach adulthood without liver transplantation in around a quarter of the children. However, in the remaining three-quarters the liver is so badly damaged that the patients need a new organ and find themselves on the transplant waiting list. Between 2001 and 2014, over 700 children under the age of 5 in the Eurotransplant region (which includes countries such as Germany, Belgium and the Netherlands) were on this waiting list. The majority of them were under 2 years of age. 

For his research, Van der Doef used data from these children to show that the extent of the liver damage and the age of the child affect the child’s risk of mortality while waiting for a new organ. The more badly damaged the liver and the younger the child, the higher the risk of mortality. One in five children under 6 months old with severe liver damage died before a suitable liver donor could be found. The average waiting time for a donor organ in that period was approximately six months.

‘The children deteriorate during the waiting period’, says Van der Doef. ‘Some of them are in hospital for weeks or even months. The parents are completely powerless and have no option but to watch and wait. The research shows how important it is to find a solution to these long waiting periods and the high risk of mortality. Living donation seems to the solution we have been waiting for.’

In this relatively new procedure, a healthy person, often one of the parents, donates part of his or her liver to be transplanted into the child. Once transplanted, the section of liver in the child grows into a full-blown liver while the donor's liver regenerates. 

Living donation was first performed in the Netherlands in the UMCG in 2004. The procedure has been refined over the years and is now being performed more frequently: in 2016, 12 of the 25 liver transplants in children were performed using a living donor. The UMCG is the only hospital in the Netherlands to perform this procedure on children.  

Living donations present a huge logistic and financial challenge: the operations on the healthy donor and sick child must be performed simultaneously, using two operating theatres and two surgical teams. Van der Doef: ‘This research proves that the price of the investment is well worth paying.’  


All kinds of organs are transplanted in the University Medical Center Groningen (UMCG): heart, liver, lungs, kidneys, pancreas and stem cells. These transplant programmes are coordinated in the UMCG Transplant Center. The creed of the UMCG Transplant Center reflects the essence of the collaboration: ‘Shared care for shared organs®’. The UMCG Transplant Center was founded 50 years ago this year.

Read the article in Liver Transplantation​