A huge amount of work in this area was done by the Perinatal Hospice Child in the Heart. It was founded in 2014 by Alena Peremská after she herself had to deal with a difficult situation. She was expecting her third child and tests indicated the possibility of a serious developmental defect. Alena suddenly became a millstone when some people advised to terminate the pregnancy and an equally strong group recommended the opposite.
“I needed to talk to someone about it. I needed information and at the same time the feeling that I was respected regardless of which path I took,” she recalls. Her story had a happy ending. The daughter was born completely healthy.
“It all suddenly made sense about a year later. I came across perinatal palliative care programs in America. That was exactly what I needed when we were expecting our Nela,” adds the founder of the association.
Silent miscarriage – silent pain that catches you off guard
Today, the organization operates nationwide. It supports and accompanies families affected by the loss of a baby at any stage of pregnancy, during or shortly after childbirth. It provides direct care, but at the same time strives for education among health professionals.
“Perinatal loss (in the period from conception to birth and shortly after) is one of the worst moments that can affect a pregnant woman and the obstetrician. We know how to solve the matter from a medical point of view, but there was not much talk about how to take care of a woman’s soul before,” Marian Kacerovský, head of the maternity hospital in Hradec Králové, confirmed to Práva.
Memory box with fairy tales
For example, the paramedics wondered if they should show the child to the family after the loss? If it doesn’t tear their wound unnecessarily? Should they talk about him by name? It soon became clear that the parents were troubled by the fact that they had no memory of their child.
And that’s how the Dítě v srdli hospice came up with memory boxes. Memory boxes, which contain items that will help preserve the memory.
“There is a need for a little oil. A soft blanket for wrapping a body or two teddy bears. The parents keep one, the other travels with the baby. Very often, parents switch teddy bears at the funeral service and keep the one that was with the baby the whole time,” explained Alena Peremská.
There is also a book of fairy tales in the memory box. “A lot of parents told us they wouldn’t have thought of telling a dead child a story, but they were glad they did. They often read the book to their other children as well,” Alena described the way to give parents the space to be good parents. Today, the association distributes memory boxes to almost half of Czech maternity hospitals, last year it distributed 452 of them.
In almost ten years, the volunteer organization has become an organization providing professional social counseling and counseling for the bereaved. Its seat is in Kostelec nad Orlicí.
They care for 1,900 families annually
Every year, hospice workers care for more than 1,900 families. Their experience soon showed a number of methodological and legislative shortcomings. Until 2017, for example, parents did not have the option to bury a child they lost during pregnancy. Only born children could be buried.
“Since this year, even families who have experienced an abortion, and there are about 1,800 of them per year, are entitled to funeral benefits. It was absurd. If the loss of a child was defined as an abortion, the parents could bury the fetus, but they did not receive the allowance,” pointed out Peremská.
Thanks to the enactment of the right to burial, families no longer have to experience uncertainty about where their child ended up. “We receive calls from families searching for the whereabouts of their children’s remains. Until 2017, it is practically undetectable. In 2022 alone, the staff of the Child in the Heart helped 35 families find their child’s resting place,” added Peremská.
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