The project “Aktion Schmetterlingskinder”
Facts in Germany
We call them “Sternenkinder” or “Schmetterlingskinder” (mean “Star children” or “Butterfly Children”, some may even say “Angel Child”). This term is used for all children dying during pregnancy, birth or shortly after birth.
Situation in german maternity hospitals is very difficult for the parents.
They often suffer from great mistakes and failures during the process of birth and farewell. This faults result from a lack of supervision, education, advanced training and the general problems regarding to german birth assistance and midwifery itself. Manpower shortage, a lack of empathy and appreciation for the child as human being are further reasons.
This “failures” are - for instance - missing transpacy, unsensitive acting, short or missed birth assistance, depreciating mother and child (for instance, by telling: “It´s not a REAL child” or “it´s not a REAL birth”), sparing the father out and so on. One of the main problems still is: most professionals are not able to create a dignified, gentle, kind and healing farewell process for children and parents.
This farewell “ceremony” is essential for mother and father. Not only to get through the situation, as well to deal with all the emotions afterwards and being able to find a way of healing and back to inner peace again - someday, somehow.
Many professionals forget essential things - like collecting memento´s, encouraging parents to touch their child - somethimes this is even prevented by the professionals. Often they male them feel sub-standard, many parents are forced to say farewell as “quick” as possible. And, way too often, the child is threatened in a very undignified way.
In the past, as well as now, this indignity leads to the fact babys had to be burried naked - or they weren´t even burried at all. Even today. In germany the general question of “life” and “when starts a baby being a human AND person”, is strictly defined by german law. This says: Only a still born with a weight of or more than 500g or a baby being alive during birth is a person. Still born babys less 500g aren´t human beings ... regarding to law. Their birth isn´t a “birth” ... by law. It´s just a kind of “medical procedure”. To be honest, professionals and bookholders call it - with all the cruelity this means - an abortion. Nothing more. Nothing less.
All of this leads to the fact, that even today (2017) babys born with a weight less than 500g don´t have to be burried. Hospitals are allowed to dispose them as “organical waste”.
Most parents don´t even know about this.
Another, big and terrible problem is the term of “birth”, as well defined by law. This means - most babies who supposed to be still born before mother reached week 25 (means 7th month of pregnancy - remember: preemies survive by week 22!) aren´t allowed to be born in a delivery room. Women have to give birth in usual hospital rooms, usual hospital beds. They don´t get any help during birth, because nurses aren´t educated enough and midwifes are far away, forced to walk long ways before reaching the women. The consequence of this - those women don´t get any kind of pain relief. No real midwifery. No one to tell them how to breath, how to handle the contractions. No help at all.
(And - to say it very clear: the common understanding, a birth in an early state of pregnancy doesn´t mean any or a lot of pain is totally WRONG. Contractions hurt a lot. Their intensity doesn´t base on the state of pregnancy. They even hurt more, because women know this incredible painful process won´t lead into happy end meaning a lifetime full of love. It just means letting go. Forever. Those women step through the incredible pain of birth to give birth to death and a lifetime of loss and yearning. And they know, they know exactly.)”
All of these problems result way too often in the fact, parents leave the hospital deeply traumatized. Not only by what they had to go through in general, the loss. Birth and death in one glimpse of the eye. It´s about the failures in the behaviour and the general treatment. Aftermath: PTSD, depressions, psychosis, familial and socio-psychological conflicts, problems at work etc.
Losing a child - no matter how “old” it was - is one of the hardest things persons have to suffer.
This pain shouldn´t be increased by unqualified care or treatment. Neither of parents nor of children. It´s about dignity and compassion.
Professionals often aren´t to blame. We want to make this clear: They don´t have any choice, because it´s a lack of education - as we mentioned before -, no guidelines, no supervision. Legal circumstances don´t allow an intense caring because of payment problems. And during times like these, when germany suffers of a lack of manpower in all hospitals, a time midwifery is rationalized by government more and more - this problem even grows bigger.
As you see: We miss dignity - for mother, father and child. For the whole family.
Yet human dignity is inviolable.
Our goals and tasks
“Aktion Schmetterlingskinder” wants to ensure better circumstances during birth and farewell of a so-called “Sternenkind”.
At first, we offer “farewell boxes” at no charge to any german hospital, midwifery office, training schools and funeral homes.
The boxes include “farewell sets” for the little babies.
These sets include clothing for the little ones, because they are to fragile and small for usual baby clothes or doll clothes. Many parents are very traumatized by realizing their children were burried naked.
The sets include clothing make sure the whole body is covered in a decent, gentle way. Clothes are hand-crafted by hundreds of volunteers. Every piece is an individual item, done by hand and in deep love and compassion. Thoseo gentle hands are the heart of our project. We are grateful for every single one.
Our “Sternenkinder”-clothing is designed with professionals, so it considers the needs and special physis of the small children.
Furthermore we offer parents a little “book”, giving them precious advices and helps. We step at their side - from the time of the diagnosis, during birth, farewell, funeral and the whole first year of grief. Our grief “hotline” always offers help, whenever they are in need of - and if it´s only someone listening to them. We link parents with support groups, funeral parlours, graveyards and grief associations as well. Of course, there´s our grief forum on our assocation´s website. It offers parents a safe place to communicate and connect. There are a lot of other bereaved parents, since years, some even educated in grief or psychological help. They offer help and compassion to freshly bereaved parents. Day and night. Listening to them, offering a compassionate heart.
Educating professionals, such as midwifes, nurses, psychologists and doctors, is our highest priority besides of our farewell sets.
We really want to accentuate this fact: Absence of clothing (and other stuff) only means the symptom of the illness.
That´s why all our “boxes” contain a lot of material for self-education. We offer guidelines, formulares, blanks, experience reports and much more, to enable professionals creating clear processes for the birth of a “Sternenkind”. The whole team will be able to keep to this process, no one has to act just by the own “feeling” or “meaning”.
And, of course, we try to organize regional and national trainings for the professionals. The trainings are meant to sensitize professionals and teach them how to create standards and clear processes fitting into the rhythms of hospital bussiness.
Base of our work
Our work bases on three main aspects:
- Offering stuff to create a dignified and proper farewell - our farewell sets
- Offering support informations to parents, as well as our “grief hotline”, including links to regional support groups and other associations, and including our online support.
- Offering material of self-education to professionals, including informations to create standard guidelines and processes.
We consider all three aspects equally important.
Farewell sets mean a “toolkit” for professionals. They literally offer them something “to work with”, to create a dignified farewell. Clothing as well as all the love-made accessoires give a warm feeling to parents. A feeling like “somebody out there created something special for my own child, somebody out there is compassionate for our love and loss.” That means a lot during the hard and isolating situation of loss.
Furthermore clothing as well as a gentle farewell are a sign of dignity. A dignity the child - no matter “when” it was born” - deserves. It is a human being. A little human being, yes, but it is. The only difference to any other child may be the fact fate took it from its parents loving and hurting hearts much, much too early.
Mother´s and father´s love doesn´t depend on charts, weight, maturity or height.
Information material is a helpful thing for parents, because it informs and guides them from the beginning to the griefing process. It means a lot for parents if they can inform about their rights and possibilites during the situation, not only afterwards (because it´s too late then, in so many aspects). It helps a lot if they don´t have to search for support groups, funeral parlours or graveyards by themselves, because during shock, trauma and grief, the human brain seems to be full of “mists”. The book also helps them on their way during grief. They can contact our hotline, so they don´t have to leave their house for help (because during the first days it´s very hard to get out of the house). And if there´s only somebody listening to them and allowing them being theirselves.
Educating professionals is more important than ever. The situation of midwifery in germany is bad. Reasons are to find in politics and financial aspects. There aren´t much midwifes left and they have way too much to do. They are not able to give “still births” the attention and love and compassion they really, really need. Desperately.
This kind of birth isn´t “efficient” regarding to financial aspects. Not for hospital directors, because it´s not paid as a birth. It is important to create clear and unique guidelines and standards. They have to be nailed down, if only to avoid all the socio-economic aftermath.
Of course, public relations is the fourth aspects of our work. The subjects “death” means a great taboo in our society. Death of a child even more. If children die during pregnancy or after birth, many just define it as a kind of failed attempt. Minority of people know about the bad circumstances in our country.
It´s important to get this subject in perspective. So, the bereaved parents won´t have to suffer from social isolation and insufficient care anymore. This insufficient care often starts at gyn´s office and ends in the visit of a non-educated psychologist.
How our projects works
At the moment, we try to assemble trainings - but our financial situation still doesn´t allow us to reach the neccessary level. We are in HIGH need of more donations and support.
Our work bases on volunteering. But it´s too much work, so we have to create jobs in the end.
The roots of our project are the hundreds of volunteers hand-crafting the clothes and accessoires, the volunteers helping with office works, packages and more.
Our volunteers send all the things to our main office in Bürstadt, where we sort them, getting them ready for shipping and storing them until they are ordered.
Our volunteers register to our association, so we can train them from the very beginning, because the production of the clothing and accessoires needs some “rules”, because of the physical state of the babies.
Besides hospitals and funeral parlours, we send farewell sets to the parents if they contact us before the mother gives birth.
Of course all farewell sets are at no charge. We bear all costs by our donations. Materials need to produce clothing and accessoires are donated by the volunteers themselves - in 90%. That´s why our project was able to rise, to grow and to live on, until today.
Today we care for almost 500 stations and parlours. But, because of the difficult situation of midwifery in Germany , we recognise a clear regression in willingness of professionals. It´s often caused by massive lack of time and manpower. They are not willing to work with the materials we give to them anymore. So - this shows in an impressive way, how very important training, developing structures and standards and getting into the spotlight of public understanding really is.