When the baby is born healthy, everyone is happy, and the young mother gets flowers and congratulations. Generally, the births of stillborn children or those suffering from severe, incurable, lethal defects are silent.
- In the event of fetal death or spontaneous miscarriage, women are persistently accompanied by the thought that the death occurred in their body. And that they are a coffin for their own child
- Those who have survived the loss have a feeling of split: “I am I and my body”, “I am a separate being, and next to me is the body that failed me”. The lack of a rounded tummy, the lack of noticeable movements remind you of a loss
- “I couldn’t believe it”, “it’s a mistake”, “impossible, nothing like that could have happened to me” – they say when they recall the moment of making a dramatic diagnosis
- Sometimes women can repeat very accurately the words a doctor used when giving wrong information. They will remember them for the rest of their lives
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Edyta Brzozowska / Medonet: Women who know that their pregnancy is burdened with a severe lethal fetal defect come to your office. What are they saying?
Anna Bajkowska, psychologist, psychotherapist: They generally want to tell their story in detail first. They have a strong need to share what has happened in turn since they found out about the pregnancy, what emotions accompanied them when they saw two magic lines on the test. They tell about the first weeks of joy, hope and imagining a toddler who was about to appear in the world.
Until the moment comes when they hear from the doctor a devastating diagnosis.
It is this clear point in history that changes everything. The moment when a diagnosis, like scissors, cuts joy from despair and hope from fear. Women find out about it in different situations – during routine examinations, for example with an ultrasound machine, or when discussing the results of additional tests. They are always shocked.
Very often they complain that they ran out of information – what next? Explaining the specificity of the child’s disease, discussing the prognosis and possible ways of proceeding.
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They share their emotions with you. What?
For example, that at that moment the whole world collapsed on them. They are accompanied by a whole sea of difficult emotions: great sadness, fear, helplessness, sometimes also rage and disagreement with the injustice of fate. They also often talk about guilt. It happens that they see the reasons for what happened within themselves, and wonder what they could have done differently. Often all these emotions occur simultaneously, they can interpenetrate.
When we go back to the diagnosis, they often say: “I couldn’t believe it”, “it’s a mistake”, “impossible, nothing like that could happen to me”. Some of them can very accurately repeat the words used by the doctor. They will remember them even for the rest of their lives. Some of them mention that they had a feeling that what was happening did not quite reach them, that they saw and heard through a fog or invisible glass.
- Lethal defects of the fetus. What does it mean? [WE EXPLAIN]
Do they blame themselves for carrying a damaged or dead fetus?
It often happens that when there is information about a lethal fetal defect, or when it becomes dead or spontaneously, women are persistently accompanied by the thought that this death occurred in their body.
And that their body is a coffin for a child?
For many mothers-to-be, this is the hardest part. It is accompanied by a feeling of great loneliness, lack of support and often a lack of guidance on where to seek help and what such help may look like.
Do they feel that their own body has failed them?
I think that we are culturally and socially imprinted that a woman’s body is created to give life, and her role is to give birth to a healthy child. We often grow up in such a belief, this is how we are brought up. Little girls are already playing mothers, taking care of dolls, playing with prams. Later, when they grow up, they hear from the priest at the church wedding to open up to the gift of having children. Then parents and grandparents ask at the festive table: when will we have a grandchild? All this means that women who have experienced a miscarriage or that their child has been diagnosed with a lethal defect often feel that their body has not behaved as it should.
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Do you help women find unity with the body?
I believe it is important to try to do this. Women who have experienced loss are often accompanied by a feeling of separation: “I am I and my body”, “I am a separate being, and next to me is the body that has failed me”. Experiencing a miscarriage or a decision to terminate a pregnancy suddenly breaks the physical bond between the woman and her unborn child.
It happens that in such situations, looking at your own body can be extremely painful. For some time the body, changing itself, signaled the expectation of being born. Now, no rounded tummy, no noticeable movements – they remind you of a loss. It’s hard to even touch him or let your partner do it.
How to get used to the prospect of a difficult motherhood?
The question is, what does “tame” really mean? And is it even possible? For some, it will mean preparing for what happens next. Others will see it as “accepting” imminent events.
At the stage of receiving the diagnosis of abnormalities in the development of pregnancy or suspected serious defects in the child, it is important to obtain reliable and reliable information.e. I know from experience that accidental search for messages on the Internet increases the feeling of confusion and fear even more. You can find literally anything on the web, and it is difficult to separate what is useful from what is untrue or worthless. On the other hand, we need information to experience a sense of control, the possibility of making a decision, making a choice in this extremely difficult and crisis situation, at least to a small extent.
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Do pregnant sometimes believe in a miracle? That the child, despite the prognosis, will be born healthy?
For some defects, medicine tells about a certain degree of probability that a child may be born less seriously ill than research indicates. In the case of others, such as Edwards’ or Patau’s syndromes, in-depth prenatal diagnosis allows them to be XNUMX% confirmed.
Believing in a miracle, especially in the initial period, when the experience of a crisis is at its strongest or when the final diagnosis is still uncertain, can sometimes help you survive and face another day. In a situation where there is no chance for a miracle, the therapist may support a woman or a couple in accepting this information, recognizing it, experiencing related emotions and making a choice which is best for them at a given moment. The best or just the only one possible.
How do mothers view their terminally ill children, visibly flawed, distorted?
They see them with the eyes of love. In the memories of the parents who describe the moment they saw their child for the first time, the heart’s narrative dominates: “this is my beautiful daughter”, “lovely son”. Although often children who suffer from lethal defects are born prematurely and are tiny or look much different than a healthy full-term baby, and although this sight can be very painful for parents, it is also filled with great tenderness.
I would like to emphasize once again how important is the role of preparing parents for what is going to happen and providing them with comprehensive care. Providing them with the most important information about the specificity of a given disease, what it means in practice, what a baby may look like after it is born. All this, at least to some extent, can help them prepare for this moment.
They know their children will die soon.
Yes, but for some women, reporting pregnancy, the opportunity to say goodbye to the baby and the awareness that this is the time she is given to be with him, will strengthen her and help her cope with the loss.
There are several organizations that support parents in the face of loss. One of them is the “Rainbow Blanket” Foundation, which sews colorful blankets, clothes, cones and other things in which these little ones can be wrapped. Among other things, to say goodbye to them. For many parents, the opportunity to spend a few hours with the baby, hug it after giving birth, the possibility of kangarooing, skin-to-skin contact, taking pictures, was something that helped them survive this situation and say goodbye as they needed to.
- President of the Polish Society of Gynecologists and Obstetricians: I feel sorry for the patients above all
When a baby is born healthy, everyone is happy. Mom gets flowers, wishes, the family decorates the house with colorful balloons. The births we are talking about are usually accompanied by silence.
And also a lot of loneliness and silence. That is why it is so important to help expectant mothers prepare for such a baby. So that they do not feel that they do not deserve to boast about the birth of a child. I know some of them have a great deal of guilt or shame, and sometimes feel that they don’t deserve what mothers give birth to healthy babies. For support, for good word, the presence of loved ones during childbirth. I wish it could change. That women who face such an unimaginably difficult situation as the prospect of losing a child would know that they do not have to be alone in this experience, that their emotions and needs are important, that their choices matter.
There are women who find it unbearable to know that the pregnancy would continue.
Therefore, they should be able to make an autonomous decision, to make a choice that will be better for them in their survival, as it will be possible for them. One of these paths is the decision to terminate the pregnancy. When women who have made a decision to terminate a pregnancy seek consultation with a therapist, often the reason they seek support is because they believe that no one will understand their decision anyway. It happens that they are left alone with her.
Sometimes they are also unable or not with whom, or do not want to share their emotions. And they feel lonely with it, because the burden of resolving the dilemma rests mainly with them. Often, having made a decision, in addition to many other emotions, they also feel relieved. Relief that they may not condemn this developing baby to the unpredictable pain of coming into the world. That they could choose the moment to say goodbye to him. That the next weeks and months of pregnancy will not be spent in anticipation and fear of what will happen. It’s about choice. Each choice: when and how to say goodbye, whether they want to bury their child, give him a name.
Every woman needs psychological support after miscarriage, termination of pregnancy?
It depends on what meaning gives the experience. Not every woman will experience loss as mourning, not all will have the same needs. When working with people who have such experiences, it is very important for the therapist to be able to put his perception of the situation in brackets and carefully follow the meaning of the patient’s experiences. How does he talk about them. “Have I lost my pregnancy” or have I “lost my baby”? Or “the embryo was not developing properly” as opposed to “my baby was sick”. It is extremely important to really hear what you are going through. And accompany her as she needs it.
What should such support look like? Because psychological help is probably not enough?
A psychotherapist can help in naming and expressing emotions, gradually coping with pain, and making sense of experienced experiences. It is up to the doctors to inform about what may be happening during pregnancy, what the birth may be like, and what will happen later. What is the specificity of a given defect? What are the prognosis and the chances of the child surviving the birth? What will happen then? How will caring for him look like? Who can help with it? Comprehensive assistance is extremely important here: a gynecologist-obstetrician, geneticist, palliative care specialist, psychologist, sometimes a social worker or a clergyman.
Such help is offered by perinatal hospices. They support parents from the moment of diagnosis, throughout the entire pregnancy, until the birth. If the child survives, they are taken care of by a home or inpatient hospice. My experience shows that couples who received comprehensive and coordinated support already at the diagnostic stage had a chance to better cope with this experience.
Fathers need support too?
Of course. Although I have the impression that, unfortunately, we sometimes forget about it. I am aware that the fact that the embryo develops in a woman’s body, that she feels the baby’s first movements and that her body changes in the following weeks of pregnancy is a unique and inaccessible experience for a man. However, it is not true that the father-child bond does not develop until after birth. Therefore, let us not forget that men who find out that their child is terminally ill also need support. And although they sometimes believe that they should deal with crisis situations themselves and, above all, they want to take care of their partner, it is very important for them to be able to experience the emotions associated with loss and ask for help when they need it.
Anna Bajkowska – psychologist, psychotherapist. She gained clinical experience, among others at the Academic Center for Psychotherapy, the Center for Sociopsychiatric Rehabilitation at the Mazovian Neutropsychiatry Center, at the Day Ward of Neurosis Treatment at ZOZ Wola, at the Psychiatry and Combat Stress Clinic at the Military Medical Institute, as well as at the Itaka Foundation’s Psychological and Psychological Group and at the Department of Psychiatry and Psychiatry at the Institute of Psychiatry and Affective Diseases. . Since 2013, she has been associated with the Nagle Sami Foundation, where she runs, inter alia, support groups for bereaved people.
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