Welcome to the website for Steunpunt (Support centre) Nova: lost expectation. Our desire is to help you to find guidance in what is often a confusing and emotional time of grieving and loss. On the ‘parent’ page, you will find nine clickable pictures. Clicking on these pictures will guide you to all information and resources that may apply to your situation. At the bottom of each parent page you will find the practical information about the days leading up to the funeral, the relevant laws and regulations, books, music and help during the grieving process. In addition, we have developed four Help Charts that will give you a quick overview of one of the topics that may be on your mind:
Help Card: the delivery
Help Card: making memories
Help Card: days until the funeral
Help Card: the funeral
For ease of reading, we will consistently refer to the baby as “he” and “him”. If you have had a daughter rather than a son, please read “she” and “her”.
For caregivers, we have provided information regarding perinatal mortality rates, opportunities for training and seminars, articles about perinatal mortality, support in the form of dos and don’ts, recommendations for the physical care of the baby and checklists. Among the parent reports, you will find anonymised pregnancy and partus reports.
Meaning of the name
Nova has two meanings:
- “new”, for the new life that heralded itself.
- a star that suddenly takes on much greater brightness before gradually, over a period of several months to many years, returning to her original hue.
Even though your child did not survive, or did not live long, outside of your womb, he will always take up a special place in your life.
The subtitle for Steunpunt Nova is ‘lost expectation’, because all parents who are EXPECTING create a vision in their mind of a future with their new baby. It doesn’t matter how long or short the pregnancy lasts, if your baby cannot stay, you have to say goodbye to that expectation.
A national, independent support centre for parents who lose their baby at the moment in which welcoming and saying goodbye occur simultaneously. Also in respect of the caregivers who provide support for those parents.
All parents who are confronted with perinatal death are referred directly to Steunpunt Nova, so that they can receive accessible and easily navigable information, without having to roam through a thick forest of fragmented information.
For caregivers, we organise workshops, seminars and clinical lectures. The core team-parents will share their experiences, so that parents who lose a baby receive as optimal and empathetic care as possible.
We facilitate establishing contact between peers. We have a physical location where parents can come together.
In the future, we will be able to offer financial support for making funeral arrangements.
You can read more in our policy blueprint here.
You can find our annual report for 2019 here.
Steunpunt Nova works partly with professionals who work with infant mortality on a daily basis. Thus, they are up to date with all current developments and possess the expertise that you are entitled to know. In addition, we work with a core team of parents who share their experiences and give their input for the content of the website.
Parents who have lost their child are suddenly confronted with having to organise a funeral. Something which you will not even have considered ever having to do as a parent. The costs associated with a funeral are very high. Many young parents do not have funeral insurance, or cannot afford to pay for a funeral out of pocket. And yet, at the same time, organising a beautiful farewell can be extremely helpful in the grieving process. Stichting Félice wants to help with these issues, and thereby make this sad day a little bit more beautiful.
Committee of recommendation and advice
The mission and vision of Steunpunt Nova is carried out by specialised caregivers and care institutions. The information on this website is fact checked and supplemented by these experts.
Dr. E Pajkrt: professor in Obstetrics, with special focus on prenatal diagnostics and foetal echoscopy.
Dr. J.W. Ganzevoort MD PhD: gynaecologist and perinatologist in the Amsterdam UMC.
Floortje Agema: mortuary worker in the Radboud UMC, author and coach.
Anne-Marie Vermaat en Hubertien van Heek: specialists in the field of grief- and loss guidance.
Ruth van den IJssel – chair
Ruth lives in Diemen with her husband and three children. In 2010, her son Roman passed away in her womb after a 32-week pregnancy. “I had an immediate sense that we were going to do something above and beyond “just” saying goodbye. We wanted to welcome him and get to know him first. Only after we had done so, we were able to say goodbye. This was something I did intuitively. Since then, however, I’ve become aware that scientific research has also acknowledged how important this is.”
In 2014, she founded, along with Francien Bisschop, ima funeral care to guide parents in welcoming and saying goodbye to their newborn baby, and to organise the funeral. After five years, they considered it their moral duty to convert the experience, expertise and knowledge gathered in supporting 300 families for use in a support centre for parents going through the same experience.
Mathijs Lourens – secretary
Matthijs is the father of Alex, Myla and Liva. Myla died in december 2015 after 27 days in the hospital of the rare disease ACD. This disease makes quality of life virtually non-existent. However, Matthijs did not want to leave it at that. He has written a book and decided to start running marathons, both for the purpose of bringing ACD into the public eye because he feels every child deserves a fair chance – even if they are born with a rare disease. All this led to him establishing, with his partner Jessica, the foundation Stichting ACD. Over the last few years, Matthijs has directed his efforts at breaking through the taboo surrounding infant mortality, supporting the Ronald McDonald Houses and speaking at fundraising events. In addition, he regularly gives lectures to young doctors in training.
Nico Hendriks – treasurer
Nico lives with his wife and four children in Utrecht. Despite not having gone through a “lost expectation” directly, they have experienced it from up close and understand the special meaning of saying goodbye with care and attention.
Besides ensuring financial responsibility and financial policy, I am looking to use my experience as an IT-technician in education innovation to contribute to the growth of Steunpunt Nova and its name recognition. I serve on the employee council for the UMC Utrecht hospital and an active member of the corporate fire brigade.
The members of the board are not remunerated for their work, though they are entitled to compensation for their expenses incurred in the course of their duties.
Steunpunt Nova, lost expectation is a foundation (‘stichting’) that was founded on 21 February 2019 under supervision of notary public Francine Bogaard-Beekman of notary firm HarmansBlocks, and is registered at the Chamber of Commerce with registration number 74096605, RISN: 859770576.