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Frontpage News 2017 The invisible parents

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The Gajusz Foundation offers a perinatal hospice for the terminally ill little ones who are still in mommy's belly as well as providing a stationary and home hospice. Photographer: FMO / Maria Knoph Vigsnaes

The invisible parents

  • “When a woman is told that there is something wrong with her baby, she tends to feel left out of the motherhood she had opened up to,” says psychologist Bogna Kędzierska. Read the story about how they approached the parents no one saw.

    It can be hard to imagine what a woman who is being deprived of her future motherhood is feeling. However project promoter, Anna Rajska-Rutkolinska and psychologist Bogna Kędzierska have eleven years of experience regarding women with complicated pregnancies. “We realised there was a need for more information in cases where the foetus had a fatal disease. This project made it possible,” says Anna.

    The project Anna is referring to is `Let me be´ where their Foundation-run hospice was given the opportunity to create a perinatal care program for mothers with terminally ill babies. In addition they launched a consultation point at a home hospice.

    8346_456474456_DSC_2925 The psychologist Ph.D Bogna Kędzierska and the project promoter Anna Rajska- Rutkolinska are very pleased with the project results in the project 'Let med be' in Poland. Photo: Maria Knoph Vigsnæs/FMO

    First perinatal hospice in central Poland

    “In this region of Poland we lacked a system that offered psychological support to mothers carrying foetuses with fatal diseases. Our idea for this project was to create a new and specialised system,” says Anna.

    Perinatal palliative care (PPC), sometimes referred to as perinatal hospice, is a new field of paediatric palliative care. This type of care applies to situations where a prenatal diagnosis suggests that a foetus has a serious and untreatable illness. The purpose is to anticipate, prevent, and relieve physical and psychological suffering. At the same time they wish to preserve quality of life for the baby and family, as well as honouring parental preferences and wishes regardless of the baby’s length of life.

    In Poland, pregnant women diagnosed with foetus fatal defects (FFD) can decide to either continue the pregnancy and conceive or terminate the pregnancy, which is permitted by Polish law.

    We have other interesting projects in Poland: Read about our projects on gender based violence and why Joanna thinks "Some are even blaming the victims.”

    “The families that come for a consultation don’t feel comfortable about termination. They want to be presented with different alternatives. We think it is important to underline the difference between a ill child and a damaged foetus,” says psychologist Bogna Kędzierska

    “We prepare the parents”

    The project is financed through the Norway Grants, with the primary objective to improve the PPC availability. This is done by establishing the first perinatal hospice in central Poland, and the second nationwide. The specific objective is to be able to offer help to an increased number of patients.  

    “We prepare the families in different ways. The main thing is the understanding. We continuously give them detailed information about the process. A paediatrician and a psychologist assist in legitimising their feelings,” says Bogna adding that the society tend to treat these parents with dying children as invisible.

    Since the project was implemented in 2014, the hospice has assisted approximately 700 women through the process of giving birth to ill and dying children. This is the first hospice within this region to provide this kind of medical support.

    8348_454947451_DSC_2895 The hospice located in Lodz, two hours outside Warsaw, is decorated in bright and playful colours. It offers a perinatal hospice for the terminally ill little ones who are still in mommy's belly as well as providing a stationary and home hospice. Photo: Maria Knoph Vigsnæs/FMO

    A change in attitude

    The project has also joined forces with public hospitals and according to Anna they can already detect a change in attitude among health workers in central Poland.

    “I believe this project has been eye opening and raised more awareness for the different options available. We have also received media attention and noticed an increased awareness in the public society,” says Anna. 

    The project also offered medical and psychological training cycle Doctors, nurses, and midwives were trained in how to communicate with and understand parents that choose to give birth to a terminally ill child. Among other things it has been said that the defining moment when a mother says “goodbye” to her baby, has a crucial impact on her grieving process. 

    “The key in this project is to provide these women and children with much needed medical support. The Norway Grants made it possible to strengthen our PPC service, and for that we are grateful,” says Anna.

    We have other exciting projects in Poland financed through the EEA and Norway Grants. Read more about them here: 

    How did they get Polish children interested in maritime culture and history?  Read the full story here

    The arctic eco system is affected by climate change. But how? Read about Poles and Norwegians joining forces in exploring Arctic.

  • Country:

    Poland


    Project title:

    Let me be - perinatal care program for children with lethal defects - launching of a consultation point at a home hospice

    Project number:

    PL07-0010

    Priority sector:

    Human and Social Development

    Grant:

    € 1524858

    Status:

    Completed

    Project promoter:

    'Gajusz' Foundation

    Type of Institution:

    Other type of NGO

    Project duration:

    21 months

    Project cost:

    € 1,926,347

    Grant from:

    EEA Grants

    Perinatal palliative care (PPC) is a completely new field of pediatric palliative care. In Poland pregnant women diagnosed with foetus lethal defects can choose between continuing the pregnancy and giving birth or – what is allowed by Polish law – termination of pregnancy. The main aim of this project is the improvement of availability of PPC thanks to establishing the first in central Poland and the second nationwide perinatal hospice. The specific objective is to increase the number of patients of Palliative Care Center for Children and extending its activity of care before labour. For the first stage of the project set up of an consultation unit is planned for pregnant woman with diagnose or suspicion of lethal foetus disorder. In parallel to creating an advisory spot the project provides educational activities directed to staff of perinatal diagnostics). The project includes a medical and psychological training cycle. Project is directed to: 1) pregnant women with suspected or diagnosed lethal disorder of the foetus; 2) doctors (and nurses) who take care of pregnant women and diagnose the lethal foetus disorders