– I am convinced that most of those who so loudly demand a ban on termination of pregnancy burdened with an obvious and serious disease have never seen such a child with their own eyes – says Dr. Krzysztof Nawrocki, medical director of the Małopolska Hospice for Children.
- – Young hospice patients react to sound, sometimes to touch. Their only reaction is a slight grimace or a smile. But there are also children who cannot even do it, because they are trapped in their own bodies – says Dr. Nawrocki about his charges
- – We cannot fix nature, we do not replace and glue genes. If someone is born with a trisomy or with a seriously damaged brain, unfortunately we will not save him in the coming years – he explains
- Dr. Nawrocki: a hospice doctor is like a confessor. It happens that mothers tell me that if they knew how sick their children would be, they would not choose to be born
- January 27 this year. a judgment of the Constitutional Tribunal was published declaring that termination of pregnancy due to fetal defects is inconsistent with the Polish constitution. Thus, the provision became binding law
- On this occasion, we recall the conversation with Dr. Krzysztof Nawrocki, medical director of the Małopolska Hospice for Children, which was carried out in October 2020, right after the judgment of the Constitutional Tribunal
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Edyta Brzozowska: What do you think about the judgment of the judges of the Constitutional Tribunal regarding abortion?
Dr. Krzysztof Nawrocki, medical director of the Małopolska Hospice for Children, specialist in children’s diseases: On the basis of court judgments, no woman can be forced into the heroism of giving birth to a child with severe and incurable defects. And no one should, on the basis of their convictions, usurp the right to deprive a woman of an autonomous decision. I really respect every decision made in such a situation. And I admire these women and men – because the problem also concerns fathers – who, knowing about the incurable disease of their child, decide to give birth to him.
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Has any politician tried to ask your opinion, learn about the situation of children in the hospice, see them?
No never. Although I always repeat, whenever I have the opportunity: I invite you to our hospice. We will get into the car and visit together the children under our care. Then you will have an objective view of what the everyday life of these families really looks like. I am convinced that most of those who so loudly demand a ban on termination of pregnancy burdened with an obvious and serious disease have never seen such a child with their own eyes. So it is the voice of theorists. Maybe if they saw, they would understand the drama of everyday fear, fatigue and hopelessness that it would get better.
Would the suffering of these children move them?
Our pupils usually have extensive damage to the nervous system. They react to sound, sometimes to touch. Their only reaction is a slight grimace or a smile. But there are also children who cannot even do this because they are trapped in their own bodies. I cannot objectively comment on their suffering. While the physical pain is largely controlled by the doctor, it is impossible in my opinion to assess the mental suffering of a child with whom he has no contact. Medicine describes this situation as a vegetative state. I would say otherwise: these children are moving in a different dimension.
Children with what birth defects do you get?
Of the genetic defects, they are mainly trisomes. And they are not children with Down syndrome, but with Edwards syndrome and Patau syndrome. We also have more and more children with genetic defects of a different nature – with damage to chromosome fragments, often described in the literature as new, as yet unnamed disease entities. All these children a few years ago had no chance to be born alive, and if they survived the childbirth, they lived for a few or a dozen days. The next group are children with metabolic diseases. An example is Niemann-Pick disease, which also has a genetic basis, a mutation of one of the genes.
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Is this the one called childhood Alzheimer’s?
This disease, as a result of lysosomal dysfunction, causes the accumulation of lipids, including in the brain, which results in its progressive and irreversible degradation leading to death. This is how, in a nutshell, you can describe its course. We also care for children struggling with other, extremely rare storage diseases, such as mucopolysachridosis, which lead to serious damage to many organs and lead to premature death. In the hospice, we also look after children with incompletely developed lungs, which causes chronic respiratory failure or inoperable cardiovascular defects. A large group are also children with extreme prematurity, hypoxic perinatal, which causes irreversible brain damage and, consequently, severe forms of cerebral palsy.
Are these diseases incurable?
Yes. In the light of modern medical knowledge, we cannot treat them causally, so they are incurable. These disorders cannot be “repaired” surgically or pharmacologically. As doctors, as humanity, we are helpless for now. We cannot fix nature, we do not replace and glue genes. If someone is born with a trisomy, a chromosome deletion or with a severely damaged brain, unfortunately we will not save him or her in the coming years. Maybe in a few dozen or even hundreds of years it will be possible?
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Are all hospice patients doomed to premature death?
All. But it looks different on the timeline. The shortest period of care we provided until the child’s departure was three days. On the other hand, we also have pupils who, despite very serious illnesses, have been under our care for several years and I am absolutely convinced that only thanks to the heroic effort of their parents, they are still with us.
Do you often hear from mothers that if they knew how sick their baby would be, they would never have decided to give birth?
After a while, the hospice doctor becomes like a confessor, so yes. I hear such confessions from mothers and fathers who are completely helpless in the face of the serious and incurable disease of their child. This is why women of reproductive age should be asked about the right to termination of pregnancy. They have to face the problem of an incurable developmental defect during pregnancy. And if they choose to have a baby, it is a lifetime decision. And it is the systemic depriving a woman of the right to choose in such a situation is something completely incomprehensible to me. Let this decision be left to the woman, let her be able to make it based on objective scientific facts and her own, and not someone else’s beliefs. And I emphasize once again: it is not about using the right to terminate pregnancy by handfuls. It’s about being able to choose. And if a woman decides to give birth to a terminally ill child herself, she can always count on the help of the hospice.
Is it very difficult for parents to make such a decision?
For most parents, it is a last resort and an expression of total helplessness in the face of disease. It’s a feeling of failure. The birth of a seriously ill child, requiring care 24 hours a day, seven days a week, 365 days a year, months and years, is a cross that the whole family carries through life. Often they do not stand the test of time, they fall apart. There are also educational problems with siblings, as most of the parents’ energy is directed at the sick child. And then everyone becomes exhausted.
You are not convinced by promises that the state will help and “give special care” to mothers who will give birth to terminally ill children?
The discussion about financing hospice care has been going on for over a dozen years. And the discussion ends. I will not mention the systemic financing of relieving care – the Małopolska Hospice for Children was the first in Poland to create a center implementing relieving care for terminally ill children from all over the country.
During the ongoing pandemic, I am very concerned about the near future. The COVID-19 lockdown has resulted in a significant drop in income for most of us. And yet the functioning of our hospice – as well as other hospices in Poland – is based in 50-60 percent on donations and revenues from 1 percent of tax. So I don’t know how we’ll make ends meet next year, what are we going to tell the parents? That we cannot continue to help them and their seriously ill children because we do not have enough resources? These are our dark dreams and the great unknown.
Read also:
- It was a mistake that we cared too much for our son. What if we die before him?
- Experts: Prenatal testing is about giving life. What does the Court’s judgment change?
- Seven genetic diseases that mainly affect men
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