‘A separate protocol for children is very valuable’

There is a need for a separate protocol for donation in children, Marion Siebelink observed several years ago during her doctoral research. In many respects, donation in a child is similar to donation in adults, but there are certainly differences as well.

How often does donation in children occur?

Marion Siebelink: 'Every year, about 200 children die in our country in a pediatric intensive care unit. About 1 in 10 of those children is eligible to donate organs. So, every year there are about 20 potential minor organ donors in the entire Netherlands. This means that every hospital has too few of these types of procedures to become proficient through experience.'

A child is not a small adult

‘There are important differences between children and adults, because a child is not a small adult, especially when it comes to donation. For instance, the wishes of children regarding donation are often unknown because they are too young and have not always talked about it with their parents. Children from the age of 12 can, however, have their choice registered in the Donor Register. If they have indicated a wish to donate, parents can still override that choice if their child is under 16. From the age of 16, the child's wish is leading.’

All in all

The 'Child as Donor' protocol is a separate protocol alongside the Model Protocol for organ and tissue donation. Every professional can quickly look up how the donation procedure should proceed and receive tips on how to initiate the conversation with parents. This information can now be found at a glance in the 'Child as Donor' protocol, which Siebelink initiated and which is managed by the NTS. ‘Because professionals now have all the information about donation in children clearly at hand, they feel more comfortable. As a result, they can better conduct the conversation with parents or caregivers about the possibilities of donation.’

Developed together with the field

‘The protocol was developed together with the field. As a result, it contains the information that is needed. In addition to factual information, for example about when a child can or cannot donate, it also contains clear tools and tips for initiating the conversation about donation. After all, for a child under 12, the Donor Register is not the starting point of the conversation. It is crucial that the professional realizes that it is not about asking for a donation, but about offering a good choice.’

Discussing at the right moment

Siebelink knows from her research that parents who are informed in a good way are more likely to give consent for donation. Bringing it up at the right moment can also make a big difference. ‘I have spoken with parents who were approached about the subject of donation too early. They refused immediately and regretted it afterwards. If the question had been asked later, they probably would have agreed, they said in retrospect.’

Standing behind a choice

'It is not my goal that more parents give consent for donation. Parents must make a choice they stand behind. For that, it is very important that they are well informed.'