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Frontpage News 2017 The invisible parents

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The Gajusz Foundation offers help and treatment for the terminally ill newborns and their mothers.

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.

    The project 'Let me be' offers help to pregnant women carrying a fatally ill foetus. At one of the first hospices for perinatal palliative care in central Poland, they offer pregnant women counselling, care and treatment before and after labour, and provide the terminally ill newborns with relief from symptoms and pain.

    Perinatal refers to the period immediately before and after birth - from 22 weeks into the pregnancy to one week after birth.

    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.

    In addition Anna and Bogna launched a consultation point at a home hospice, as part of the project.

    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

    Continue or terminate the pregnancy

    “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) 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 - and at the same time 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 or terminate the pregnancy.

    “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 sick child and a damaged foetus,” says psychologist Bogna Kędzierska

    8347_178518840_Miłość The newborn baby is terminally ill. Photo credit: Maria Knoph Vigsnæs/FMO

    “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.

    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 an eye-opener 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. 

    8348_454947451_DSC_2895 The hospice located in Lodz, two hours outside Warsaw, is decorated in bright and playful colours. Photo credit: Maria Knoph Vigsnæs/FMO

    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 funding we have received has made it possible, and for that we are grateful,” says Anna.

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

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  • 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