A message no woman would want to hear: that her child is terminally ill, that she will be disabled, that she will die quickly. Then the child can go to a perinatal hospice – not everyone knows about their existence. Karolina Bałuc checked how they function and how they help. Material of the magazine “Polska i Świat”.
– We found out about the abnormalities in the 19th week of pregnancy during a routine USG – says Weronika Habińska. A few days later, she already knew that her daughter would be terminally ill, that she might not wait for the birth at all or leave a moment later. Anielka was with them for three months. – We were prepared for all possible scenarios, we knew what would happen when Aniela was looked after – adds Weronika Habińska.
This is because the family was immediately taken care of by the perinatal hospice. – It is a way of care, philosophy, and approach to a family that is expecting an terminally ill child – explains Tisa Żawrocka-Kwiatkowska from the Gajusz Foundation.
“It should be warm, it should not hurt, it should have loved ones with you”
A perinatal hospice is not even a specific place to which a family is directed, but a team of qualified specialists. They are with their parents from the moment of diagnosis, through the entire pregnancy, birth and death of the child. Agnieszka Jałowska from the Perinatal Hospice in Wrocław says that the help of a diagnostician, prenatal cardiologist and psychologists are provided.
However, women often do not even know that they can count on such help. They don’t get a referral from a doctor. – They almost always learn from social media – admits Tisa Żawrocka-Kwiatkowska.
The mother very often does not receive support, and even has to look for it. Often times, medical staff does not help either. – One patient heard from a doctor doing ultrasound that you would not want to see something like that on the other side of the street – adds Tisa Żawrocka-Kwiatkowska.
– The words that someone will give birth to another child, so as not to worry, they can only really get down even more – believes Weronika Habińska. After the diagnosis, the woman must know that she will be safe, that her child will not suffer. – It should be warm, it should not hurt, it should have loved ones with you – says Agnieszka Jałowska.
And if the terminally ill child survives – days, weeks or years – with severe disabilities, this support will not disappear. – It is difficult for someone to talk about finding the meaning of life in the realization of love towards his sick child, if the parent is tired, does not have money, support, is left to himself. We have to ensure this – admits Fr. Filip Buczyński from the Polish Forum of Pediatric Palliative Care and president of the Lublin Hospice for Children.
“After what I experienced, I wouldn’t be able to force or persuade anyone to do it”
Doctor Michał Błoch takes care of terminally ill children on a daily basis as part of a home hospice. She says that parental awareness is crucial even during pregnancy. – When a mother is at a crossroads, whether to terminate the pregnancy or not, or whether to remove the child from the hospital or not, it is a conscious decision and responsibility that gives these families the strength to survive. If they are deprived of this choice, some of this power is also taken away – says Michał Błoch.
Parents need strength the most. – After what I experienced, I wouldn’t be able to force or persuade anyone to do it. Love is the only thing that makes a father or mother able to do anything for such a child – says Weronika Habińska.
For this, what matters is system support. On Friday, Minister Michał Wójcik from Solidarna Polska presented a draft act on perinatal hospices. – Let us have empathy to help such people – he appeals. It is about medical and psychological support. – I have a little deja vu, but we have been working this way for almost eight years – points out Tisa Żawrocka-Kwiatkowska.
A dozen or so perinatal hospices all over the country offer real help. The change would be that the gynecologist is responsible for informing the woman that they are entitled to this help.
Main photo source: TVN24