Which case from the past motivates you to this day to commit yourself to this theme?

'The reason is my own son Carel *. He died in 2000 shortly after his birth, after a healthy pregnancy and a good delivery, from the consequences of a Group B Streptococcal infection that was discovered too late. Suddenly I was an expert by experience. When I was pregnant again a year later, I found it complicated. I was still in mourning and at the same time busy with the new life in my belly. I felt obligated to be happy about that. I wouldn't let myself be afraid that I would lose another baby, when I was. I wanted to disconnect it from each other, but couldn't. I looked for recognition and literature, but there was nothing about it in the Netherlands. After the birth of my other three children, I therefore decided to do my own research and to write a book about my findings and my own experiences. That led to 'Always one child too short. Handbook for pregnancy after infant death.' In it I describe the different stages of pregnancy after a previous child has died. It is still a popular book with the target group. Mothers in particular like to find recognition. I like that, but it is also distressing that it is still necessary for so many people. Fortunately, infant mortality in the Netherlands continues to decrease.'

How did you get further involved in this topic?

'In 2012 I was invited to a conference in America to talk about pregnancy after infant mortality based on my book. There I met a group of Dutch researchers, including Adja Waelput. We were both surprised by the fact that there was so little guidance and aftercare available for parents dealing with the death of their baby. In 2016 Stille Levens , the Knowledge Center for Infant Mortality , was created from the joint drive to change this. Of course, organizations for parents of deceased children already existed. But we noticed that our target group wanted its own community and a common point where all information about the death of a baby can be found. People who lose their baby often experience this differently than parents whose older child dies. Especially because they have not or hardly known their baby. Our mission is to empower the people affected by this. Because it can be nice to cry together, but you also have to move on afterwards. Parents who are looking for support in the psychosocial field or who are stuck in something can email our support team. This can be about all kinds of topics, such as misunderstanding from the environment, wanting to get pregnant again or wanting to pick up the thread of life again. They come into contact digitally with one of our experience experts who are trained to provide online help. They offer a listening ear and help the parent on their way.

They are guided by grief experts. Because it is important that they continue to have a good sense of where their guidance begins and ends. In consultation, they can choose to refer someone to a professional. In addition to support, we are also a central information point. The information we offer is scientifically substantiated and covers all themes that are important when dealing with infant mortality. Think about interacting with your other children, going back to work, research, and relationships with family and friends. Our brochures are primarily intended for parents and are well read. I think it's great that our basic brochure 'Farewell to your baby' is offered as standard in an increasing number of hospitals. The care of the baby, the aftercare for the parents and the making of memories are handled very well almost everywhere. We will inform parents and hospitals about new possibilities.'

What are your next steps within the theme?

'We are receiving more and more people who are confronted with infant death in the womb and shortly after birth. Sometimes the baby has already died. Sometimes the parents know that the baby may die after being diagnosed during pregnancy that their son or daughter has a life-threatening or life-shortening condition. We also see a role for ourselves in this perinatal palliative care to prepare these parents well for what is to come. As a member of the Expert Council, I therefore contributed to the e-learning perinatal palliative care of the Knowledge Center for Pediatric Palliative Care, which will be launched at the end of this year. This is intended to improve the knowledge of this topic among healthcare professionals involved in the care of babies and their families. We may be able to work together in several areas in the future. It is important that we know each other and can refer to each other. In addition, I want to expand the number of topics that we as Knowledge Center for Baby Mortality deal with. For example, there is still little scientific research into grief in infant mortality. My wish is that, in cooperation with us, more attention will be paid to this, so that we can also offer support and information in that area. Parents, caregivers and other groups involved in perinatal mortality are increasingly finding their way to our virtual knowledge centre. I want this to grow even further. That is why we are very active on social media. You can find us on Facebook , Twitter and Instagram .'