How to deal with the challenge

Premature birth is the reason for complex and contradictory emotions. Many parents share emotions of shock, sadness and anger because their child is in a serious health condition, which poses a number of risks. They are unable to experience fully the sadness because the child is alive. The parents do not know how to share and accept their sadness as they are expected to celebrate the birth of their child, but they do not feel like celebrating at all. The congratulations on the arrival of the newborn baby sound absurd and distant, and it is as if somebody else has been congratulated, not them. They feel devastated by the feeling of fear – whether their child would survive and if yes, what future is in store for him/her. This condition is called ‘indefinite loss’ and it leads to an overall conflict between joy and sadness.

Let us understand our feelings!

The preterm birth of a baby might provoke a whirl of emotions in the parents. You might experience guilt, sadness, anger and helplessness. Premature babies’ parents experience a nearly universal feeling of a lack of connection to their baby. There is no way to be prepared for the huge feeling of helplessness that overwhelms you at the sight of your fragile newborn surrounded by apparatuses and tubes connected to the baby’s body. Your discharge from the hospital without your baby may aggravate even more your negative experiences and your feeling of having failed as a parent.

Most of the premature babies need hospital treatment, at least until the baby’s estimated due date (when the baby was expected to be born), and some babies even longer. Your routine related to going to the hospital, other commitments, the breast-milk pumping and combating the sometimes all-engulfing fear and sadness, may be completely exhaustive. At the same time, the atmosphere in the neonatal unit makes you feel even more stressed.

During the first days, you may have the feeling of chaos and confusion. You need security, but can only have possibilities. To live without knowing what happens next is a rather difficult task.

Because of your impaired health status, you may have not been able to think firstly about your baby. This may stir up a feeling of shame (What kind of mother am I?). You may have a gnawing feeling of guilt inside of you. You keep thinking about what had gone wrong during the course of pregnancy, which caused the premature birth, and how it could have been avoided.

You might feel deceived and robbed. Every expectant mother dreams of normal pregnancy, birth and intimacy with the baby after the birth. Instead of this, you have been faced with the probability of death or impairments.

Things may not get back to normal. You yourself may feel alienated from the other people, frustrated by the impossibility to communicate. At the same time, you may feel that the others do not understand the depth of your experiences. You may also have the long-lasting feeling of fragility and limitations of your body.

The unresolved trauma may hinder your attempts to get back to your life from before birth. It may manifest itself in bursts of tears and in impossibility to cope or feel as emotionally stable as you were before. On the other hand, your attempts to cope well may be so excessive that they can prevent you from experiencing what is happening.

Take care of yourself!

Take care of yourself. This might be the last thing you feel like doing; you might not have the time and strength to do it, but the act of taking care of yourself is beneficial for everybody.

Sticking to a daily routing is of use, too. The performance of certain activities at one and the same time helps to build it. Structuring things in all this chaos and confusion can be comforting.

Emotional support – where to get help?

Check if a psychologist is available in the hospital where you gave birth or in the ward where your child/children (if different) are being taken care of. A psychologist can help you both in the emotional crisis you are in after the birth and in the contact with your baby.

Support and mutual assistance group

You are experiencing something that is similar to what a small part of the population only are experiencing. Joining a support and mutual assistance group, you will find it easier to express the depth of your experiences and feel understood. Empathising with others may help you reduce or overcome your feeling of isolation.

The Foundation ‘Our Premature Children’ works actively towards providing support for premature children’s parents and organising groups for emotional support and mutual assistance. The groups are meant both for premature children’s parents and for parents of children in a very bad health condition.

The groups’ main objectives are:

• To support parents in their coping with the stress and the flow of emotions they are overwhelmed with at the birth of their preterm baby/babies (or baby/babies in a bad health condition).
• To provide parents with the possibility to share their emotions and experience with other parents in a similar situation so that they can feel better understood and less isolated and lonely in their experiences.
• To support the contact between parents and their children, and reduce the risk of abandoning prematurely born babies or children in a grave health condition.

Online consultation with a psychologist

What does online psychological consultation mean?

Many of the women who have experienced premature birth, as well as their partners and relatives, often do not find the strength to speak openly about this, especially during the first weeks or months, and tend to seek indirect support, using often the Internet.

This consultation method has many advantages:

• It is not necessary to visit a special place or adjust your schedule, but find a comfortable nook in your home and in your heart, and pour your heart out, pour your thoughts on the screen.
• It is suitable for both the mothers and fathers, even for the family friends.
• It is suitable for people who live in distant areas and do not have the possibility to use the services of a psychologist.
• It is suitable in cases, when you do not feel comfortable to seek psychological consultation in a formal setting and prefer the privacy of your home.
• It is suitable for people who feel confused to speak openly, ‘face to face’ about their feelings.
• Online consultations provide conditions for sharing of thoughts in a safe and anonymous environment, and at the same time, they offer directly a quality consultation service.

The Internet is a part of our everyday life and you have long known the pleasant feeling of anonymity it can offer you. People often do not look for psychological consultations because of feeling embarrassed about what the others would think about them, whether they would not be censured or looked at with an evil eye, or whether the intimate things they are sharing would be heard by a third party. Every psychologist is obliged to respect your right to anonymity and treat you with absolute consideration and respect. If you need this additional sense of anonymity, the online consultation offers you this easily and accessibly. In addition, in the online consultations you are aware that you communicate with a trained and experienced specialist who works according to established professional standards.

Think whether online consultations are the best variant for you in the following cases:

• You find it difficult to use a computer or the Internet.
• You feel awkward to talk about your personal experiences on the Internet. Some people would rather have a live contact with a psychologist.
• Your condition requires psychological or psychiatric support with greater involvement. If you are going through a serious emotional crisis or have self-harm thoughts, you had better seek a direct help from a specialist and we will refer you to one.
• You have questions referring more to your medical state. A psychologist can offer you support and consultation, but he/she is not a medical person.

Fathers of premature children

Attention can be focused on the baby and the mother to such an extent, that the father’s anguish and despair might remain unnoticed. Fathers are supposed to be strong and independent. They often feel lost in their wandering from one place to another (home, hospital, work) and do not have a sense of control, safety and satisfaction.

Parents often notice that they react much more differently to a premature birth: while mothers experience everything about the event very emotionally, fathers often look more serious, silent and somehow distanced from what is happening. It is good to bear in mind that men and women differ a lot in a number of aspects and if you are a mother of a premature child, do not rush to blame your husband for not caring for what has happened.

Not infrequently have men been taught since childhood that it is unacceptable to show freely their emotions. They need to feel helpful by being absorbed in practical activities like looking for information on the topic, talking to the medical staff or accomplishing a number of other tasks, which seem illogical to the mother, but they help them regain their sense of control over the situation and their feeling of security and safety. Although being staunch on the surface, men experience the event strongly, too. It is just that they do not express it in words.

As with all unexpected traumatic experiences, fathers are unprepared to cope with the premature arrival of their child. Having expected one situation and role, they suddenly end up in another. Instead of experiencing the luxury of abundant, mixed and ambivalent feelings following the pregnancy, the premature birth brings them a touch of urgency, concern about health and even about the survival of the mother and the baby. Fathers take upon themselves the whole anxiety and fear for their partner and the child.

Siblings

What do I tell my other children? It is best to be honest with them. Provide them with the information they seek, but give them the amount and detail that is appropriate for their age. Very young children ask simple questions and need simple answers. Talk about the baby, referring to him/her by his/her first name, in the way you talk about any other member of the family.

What are the most common reactions of young children to having a baby in the neonatal unit? Even very small children can feel you are upset and sad and their lives will certainly change because of your emotional state and the time you need to be with your new baby. These common reactions usually include the following:

• They think that they caused the premature birth of the baby. Magical thinking is very common in children at the age of 2 – 6. This is the child’s certainty that their thoughts and wishes can make things happen.
• The child will not be happy about sharing his/her parents with a new sibling, although the idea of this makes him/her feel excited. They may have wished for the baby not to be born or they may have accidentally kicked your tummy and think that is why the baby is early or sick.
• They think they made you sad or upset by something they did or said. Confirm that you are sad and unhappy, but assure them that it is not because of something they did or said, but because the new baby is so small or sick.
• Their family environment and their usual routine are different and they can sense that the people around them are emotionally unsteady. This makes them feel insecure. They express this by acting out their internal conflicts, which is the only way they know to get more attention. Try to find someone they know and like (grandmother, grandfather, close friend, favourite babysitter) who can give them extra attention, not only when you are not at home, but also when you are in. Also, stick to their usual routine (such as time for meals, time to sleep and other activities) as much as possible. If they go to a nursery or school, let their teacher know what is happening so that she/he can give them more attention and understanding.
• You feel insecure, abandoned or lonely – try the above approaches. Assure your child that you still love him/her as much as before the baby came.
• They think they are sick, too. They complain more often of stomachache or other indispositions or hurts. Try the above approaches for increasing attention to them.
• They fear that they will catch the baby’s illness – most children know that they usually get ill after being in contact with someone who is ill. Assure them that neither they nor you can get the baby’s illness.
• They wonder who will care for them when the baby comes home. Show them that they are very important to you and to the family. Talk to them about ways that can make the baby part of the family. Show them you are proud of the things they can do for themselves, which babies cannot do.
• They regress – when children experience emotional stress, they often regress, i.e. they return to a kind of behaviour they had when they were younger. For example, they may begin to wet themselves more often than usual. They may stop using newly learnt words or refuse to dress themselves. They may start sucking their thumb again, use a pacifier more often, want a feeding bottle or return to their transitional object (usually a plush toy or a small mirror, which they used when they went to sleep and helped them part more easily from mum). Do not scold, punish or talk negatively to them about these kinds of behaviour. They are the child’s way of telling you that he/she needs more of your attention and love. When the child feels secure again, he/she will return to their former level of development.

If possible (if the hospital policy allows this), take your children to the neonatal unit to visit the baby. Encourage them to do something for the baby, which can help them feel him/her as their brother or sister and as part of the family, for example, let them draw their family together with the baby. Pay attention to your children’s comments and to their emotional reactions, and help them understand the things that make them feel worried.

Positive thinking and negative attitudes

Parents’ experiences at the birth of their child vary widely. They are often differentiated not only as mother and father’s reactions, but also as a type of emotion. In some cases, the early birth can require a general anaesthesia or may be so surprising and unpleasant to the mother, that she may not remember clearly what happened. It such cases, the ‘texture of the memory’ should be duly filled with the missing moments and the mother should be told about what happened in an appropriate way, without hiding the truth from her, and she should be supported to see her baby. According to many psychology specialists working with people who have experienced negative events, this is of primary importance because it can facilitate the process of recovery for both the mother and the child.

During the stay in the hospital and after it, many parents try to charge themselves with positive wishes, which can prevent them from causing a negative event magically, just by thinking about it. However, instead of helping them, this extremely positive way of thinking may be completely exhaustive for the parents or may deprive them of the possibility to meet steadily the reality, especially when things do not develop in the best possible way.

Every extreme poses risks. Thus, for example, if we are permanent pessimists and are fully armed with stormy expectations, we can fall under the so-called ‘nocebo effect’ known by science as the alternative of the placebo effect.

The placebo effect (from Latin ‘placebo’ – to please, to improve) makes people feel a positive effect of a given treatment or medicine only on the strength of their beliefs and expectations. On the other hand, the nocebo effect leads to real symptoms caused by the patient’s negative expectations or by the negative prognosis given by the doctors in charge of their treatment, even when there is no physical cause for illness. In this sense, the words you use to describe the events that are happening and the way you perceive reality are important. Nocebo can find expression in increasing the stress and anxiety about what can go wrong during the birth or after it. The way the medical staff communicates and provides current information to the parents is important, too, because the course of recovery may depend on it. The golden balance between the unrealistic positive and extreme negative attitudes lies in the creation of a clear and true picture of the event with all its pros and cons, because life is what it is and what depends on you is to live it in the most fulfilling way possible.

Of course these processes are much more complex and they need to be taken into account in a detailed conversation with an experienced specialist (psychologist or psychotherapist), when necessary.

Mum’s diary: before, during and after the premature birth

While the baby is still in the hospital, the rhythm of life of the two parents, and often of a wider circle of relatives and friends, is entirely subject to the hospital regime, diet and care. The parents are inundated with complex medical terminology related to the baby’s coming to light and they have to learn fast how to ‘swim’ in the medical slang. During the child’s stay in the intensive care unit the parents’ days and weeks are completely filled with visits, worries and hopes.

Quite often, preoccupied with care for their baby, the parents cannot have a rest and deep down, they have the feeling that they do not have the right to rest until their baby is stabilised. The truth is that there is no way to expect that you will not worry, this is impossible. However, you can help yourself if you know that the care for yourself is of prime importance for your abilities to go through these difficult times.

One of the supportive techniques you can come across as parents of a premature baby is the keeping of a diary, because meeting with your thoughts and experiences, you have the possibility to structure yourselves at moments of insecurity, to express everything you have on your minds and look at yourselves from aside. Many mothers describe the birth of their premature baby as a barrier that seems to divide life in two: ‘before’ and ‘after’. In the wide river of life, you are always yourself, although enriched or changed by certain events. The stories we tell about ourselves are often the basis on which our lives go.

The story as a life guideline is considered important from as early as the moment of your birth, when it is still believed that you cannot talk. However, more and more modern researches show the newborns’ ability to recognise and respond to human speech, especially to their parent’s voices (even to shades of meaning of the words and their emotional charge). It is not accidental that folk traditions and world mythology speak about the Weird Sisters who foretell our future with their words. The words we pronounce on meeting the child for the first time may become their ‘personal myth’ they begin to live with.

According to some studies, mothers of prematurely born children have different stories or ‘personal narrative’ about the moment of birth. Cases in which, despite the uniqueness of what is happening, the mother manages to experience the rich palette of emotions associated with the birth, are considered to lead to easier psychological recovery. On the other hand, experiences like frustration, disappointment and passiveness at birth, when the mother finds it hard to feel completely the reality of what is happening, often lead to slower and more difficult recovery. Not rare are the cases of ‘reactions deferred in time, when the parents feel intensive emotions associated with the event weeks, months and sometimes years later. It is appropriate that they discuss these cases with a psychologist or another mental health and wellbeing specialist, who can help for the family recovery in this period.

Many mothers find it difficult to recollect their premature birth experiences and often do this with reluctance. As any traumatic event, it is not easy to get back or keep long to yourself the pain and fear. The deliberate suppression of certain memories and emotions however leads to negative effects. The awareness and acceptance of events does not make them less painful or real, but it brings more peace of mind and gives you the possibility to think about other things in your life and to keep moving forward. Nobody can stand being engulfed by one single emotion for a long time – by anxiety or sadness.

Today it is increasingly spoken about the importance of telling the baby his/her true story, even when he/she are still in the hospital, although it may seem to you that it is too early for them to understand speech, even more at the time when they are growing up and start asking how they were born. Anyway, children often feel a lot of what is happening around them and adults’ words can vest the little fellow’s experiences with understandable sense. One of the parent’s most important roles is to ‘translate’ the world and events in a language that is understandable to the child, helping him/her to grow up and be themselves.

A lot of mothers say that it is useful to keep some photos or objects from the child’s stay in the hospital, which will later become a symbol of this period and help create a whole ‘Tale of My Birth’ or a home-made album. The child may look through such a hand-made booklet or mini-diary with interest and the former can tell him/her the details of their story in a gentle and understandable way. To tell your baby how he/she saw the light of day does not mean to tell them a made up or rosy story, in which everything is wonderful and nearly incredibly positive. Children need to hear the truth, but a truth they could understand, because it is the basis on which they will build up their personal ‘autobiographical novel’ and will learn from it how to accept both good and hard moments in life.