Expect a sick child

by Claudia Ravaldi
Johns Hopkins University Press
Johns Hopkins University Press

curated by Claudia Ravaldi and Daniela Fierro

This article is an in-depth study of the American text “ A gift of time ” by Amy Kuebelbeck and Deborah L. Davis.

The text, written by a journalist and a psychologist, is a clear, simple and comprehensive book on the delicate subject of welcoming parents who are expecting children with incurable pathologies and welcoming children who have a “small” life.

Life is a thought, a flash in the dark, a butterfly that lands on a flower and flies away.

Life is a blink of an eye between a sun and a moon, a heartbeat, a whispered “I love you”, a pause
on the edge of the hours, a chasing the wind that dissolves behind the horizon …?
Life is a kiss on a spring day and the evening that freezes your heart.
Life is sunrise and sunset.?
A river that flows in the bed of time, to flow where the world mixes.
(Marco Ciro Bargerri-Cyrano & Viola D’Acunto)

We are expecting a baby!

“Will it be male or female?”, “Will it look like mom or dad?”, “What name will we give it?” “What am I going to do with him? What will it be like to be a parent? ” “How will our life change together?”.

The experience of expecting a child is one of the most overwhelming human experiences that exist, both physically and emotionally and psychologically.

The changes related to waiting are in fact many, and usually even before the physical and practical changes, the couple undergoes some important psychological changes. During the first months of pregnancy when “nothing is visible from the outside” but the couple “knows” (or rather “feels”), an infinite series of projections are activated both towards the past and towards the future: the couple ” it prepares a mental and physical nest for the baby to come, and intimately prepares itself for the new role of parent.

While all these processes are taking place, fundamental for our adaptation to the new life conditions and to ensure the survival of the unborn child thanks to the development of the attachment bond, the pregnancy continues.

From the historical-cultural and anthropological point of view (there are numerous testimonies in this sense from various cultures in the world) pregnancy is not only transformation, but also “unknown”, “leap into the dark”, “waiting for the unknown”. Not surprisingly, at least in the West, people are invited to be cautious in the first trimester, “because you never know”, they try to hold back their enthusiasm at least until after the invasive diagnostic tests, and then release the tension after the ultrasound morphological, (i.e. about halfway through pregnancy!).

A context of cautious vigilance, ill-concealed and ill-expressed fears and repeated checks “so that everything goes well” is created around the baby on arrival and the pair of parents.

The bad diagnosis

It is in this ambivalent time (will everything be okay? Is everything going well? Will it be healthy?) And suspended (“I do not feel pregnant yet, for now we are waiting for the morphology to know if everything is okay” or “I am so happy, I have feelings so positive! ”), which sometimes reach the ears and hearts of parents with terrible words that no one would ever want to hear.

“There is a serious problem in …” “Unfortunately the heart has not formed as it should have” “A part of the diaphragm is missing” or “The result of the amniocentesis revealed an anomaly incompatible with life”, I am only some of the phrases that many couples hear on the day they were waiting to re-know profiles, hands, and confirmations. A serious diagnosis arrives and the idealization of the future collapses. The news is of such importance that often the parent remains suspended and incredulous, in a real state of shock: all too devastating and dramatic to be accepted and understood immediately. Among the automatic reaction strategies, the mind often refuses reality tout court, going so far as to deny it “it is impossible, they are wrong, they do not understand anything”.

Or we ask ourselves “why”, “why my son” “what did I do wrong”, in an incessant and painful search for explanations.

We feverishly “review” all the previous stages of pregnancy and even go back to before conception, in search of possible fatal errors. We were told that by leading a balanced life with a healthy diet, and thinking positively everything would be fine, our little one would be born healthy. Despite all our commitment, our caution, the superstitions, the prayers, the positive feelings, something has gone wrong and we feel incredulous, lost, lost, sometimes alone to face feelings of emptiness, to manage decisions and difficulties that from that moment onwards they will be taken and supported.

Facing an unfortunate diagnosis and deciding as a result of this dramatic event what course to give to our creative project as a couple and family is a path that we can do best only if we take the right time and choose the best operators next to us.

A good operator is not one who promises miracles or preaches to us about what we should do or think. A good operator provides all the useful and possible information so that we can understand what is happening, understand the natural consequences of the disease that hit our child and understand how we position ourselves with respect to this event. In Europe, there are good sources of reference for expectant parents of children who have a serious illness. CiaoLapo works in a network with many of these associations and with many doctors who deal with prenatal diagnosis in order to improve the communication, support and decision-making process of couples.

Expect and greet a child “with a small life”

CiaoLapo onlus does not intentionally use the term “terminal child” and least of all “terminal fetus” in this and other articles. We believe that words are very important, because they are a privileged vehicle for communication; often “calling a thing with a name” ends up becoming the backbone of the concept that one has of that thing. The name becomes content, characterizes it, identifies it.

“Terminal child” is a risky definition: with this adjective that declares an end, and often falsely projects into a dimension of already happened, already predestined and of absence of time, hope and the possibility of care and comfort, we overshadow the meaning of word “child” – “son”: if it prevails over all “terminal” we risk divesting affectively on the child, who does not deserve our attention (our pain, our empathy) “because he will die so much” “his destiny is sealed” ” there is nothing more to do “.

All of us living beings, by the very fact of living, are also dying beings, but this does not mean that we deserve less attention and less respect (and therefore also less care or affection) than a mountain or the sun, which in our imagination are very long-lived. and therefore eternal. For many parents, the expected child suffering from a serious illness represents an unspeakable and frightening pain (to the point that we often get to want everything to end quickly, because we fear we will not endure any longer), but also an unlimited love, a promise of the future that breaks. In no case, whatever the decision that the parents will take on whether or not to carry on the pregnancy, that child can ever be said to be “terminal” and therefore “already concluded, past” for that parent.

We operators through our words can help parents to keep what is positive after a bad diagnosis, or contribute to the total destruction of projects, memories, expectations and experiences (“but madam, what do you want me to tell you! in any case at the end of pregnancy! “” he is not a real baby, because he has no brain “” there are people who have carried on the pregnancy with diagnoses much more serious than yours “). We should always ask ourselves what we wish to communicate to two scared and shocked parents and how we can best assist them. Words and actions are an integral part of the cure.

A gift of time – synopsis

Exams for the diagnosis of pathology

Since 1980, diagnostic tests have become routine in prenatal care. In addition to invasive tests, now known to most as “villocentesis” and “amniocentesis”, there are other less invasive, but probabilistic screening tests, such as the “duo test” and “nuchal translucency”. The first through a simple blood sampling allows to measure the concentration of two substances connected with chromosomal alterations of the fetus: Free-Beta HCG and PAPP-A; the second, on the other hand, consists of an ultrasound that will analyze with the help of ultrasound the area behind the child’s neck, whose level of growth is directly proportional to the risk of chromosomal abnormalities and congenital malformations ( including various forms of heart disease). These tests combined with each other and with the maternal age allow to estimate the risk probability of 3 main chromosomal abnormalities, such as: trisomy 21 (better known as “Down Syndrome”), trisomy 18, and trisomy 13, but also heart or other organ malformations, such as: spina bifida, omphalocele or diaphragmatic hernia.

Screening tests are often experienced as “routine tests”, and sometimes in addition to the couple, grandparents or uncles will also go to admire, through ultrasound, “the new life”. The images flow in a dark room, the emotion is very strong, but when the risk of anomalies is communicated, the scenario and the emotional color immediately change.

Not all parents, following the diagnosis, will decide to undergo the diagnostic tests described above, due to the related risk of abortion, others, on the other hand, will accept the risk, requiring further clarifications that will help them in making the decision deemed most appropriate.

Regardless of when the news is released, the first reaction is a strong sense of confusion and disorientation that will likely accompany the couple for days. Parents begin to realize a new reality, even though they still can’t accept it.

Continue or terminate the pregnancy

After diagnosis, the first and often urgent decision to make is whether or not to continue the pregnancy. The abortion cannot be performed after the twenty-fourth week, and for some couples the time to decide is so short that understanding what happened, accepting it and planning a new and different future is an unsustainable request.

Deciding whether to continue or terminate the pregnancy is an extremely painful choice. It can be helpful to talk to experts about it, and to seek out who can provide support. In this phase, parents will tend to collect the greatest amount of information, they will not rely exclusively on their own specialist doctor, but they will also hear second opinions, they will document themselves on the network, there are those who will let themselves be guided by family and friends and who, instead, it will rely on religion.

Parents should know that asking for specific and exhaustive information is legitimate and should not be feared, you can write down and then ask everything that crosses your mind. Many want to understand what happened to their child and why, sometimes it is possible to trace the cause, other times the known explanations will be few. In any case, parents may not always have a lot of time to accept reality. They are faced with a choice: terminate the pregnancy or follow the event of things. Both choices appear terrifying, as the couple has to deal with the idea of illness or death of their little one, however. This is a phase in which many parents feel abandoned and misunderstood. It is important that the couple decide together what to do, focusing on their feelings. Some, as we said, will rely on the advice of their loved ones, others will decide for themselves. The man usually cares primarily about the emotional and physical state of his partner, however, the couple does not always move towards the same decision, if on the one hand the body belongs to the woman, on the other the child is also the man . It is important at this stage that the couple communicate their emotions and their pain and that they try to decide together and as serenely as possible.

Some parents will immediately decide to continue, others will require more time, still others may decide to have an abortion: keeping the decision made can be another difficult moment. In these situations, the emotions involved are very intense, as is the scope of the project and the results, and a strong ambivalence is often common.

Adequate psychological support can make the difference, it can help parents express themselves and reflect on what to do when deciding to continue the pregnancy, learning, in cases of terminal illness, to embrace the idea of quality of life, pondering how to make it better and more profitable, on how to love and welcome your child, while abandoning the idea of the time of life.

In the event that, following the diagnosis of serious malformations or very little chance of life at birth, the choice is to terminate the pregnancy, the ways to follow are different depending on the gestational age:

-Before the thirteenth week, the voluntary termination of pregnancy or induced abortion will be arranged, which consists in the interruption of the development of the embryo or fetus and its removal from the uterus of the pregnant woman. It can be caused by surgery or chemistry and in any case under general anesthesia. The intervention could be sustained in day hospital and would not be very invasive from a physical point of view, while the emotional pain will be intense;

After the thirteenth week and within the twenty-fourth week, the intervention or the therapeutic interruption of pregnancy will consist in the induction of childbirth. Although the woman requires the help of drugs and pain relief therapies, her consciousness during labor will remain alert and her body participates during delivery. A cynical and careless hospital environment risks amplifying the feelings of guilt commonly experienced in this circumstance.

Even if the choice has been made, it is still an emotionally and psychologically difficult choice. It is important to carefully evaluate the options that are considered suitable and to be guided by them.

In the event that we choose to continue the pregnancy, we should give value to palliative care, a support model provided by a team of medical specialists, midwives, neonatologists, social workers, child educators, genetic counselors, pediatricians, etc. the quality of life, reinforce the comfort and dignity of the patient, letting death be experienced as a natural event. Furthermore, when these treatments are combined with medical treatments it is possible to obtain benefits for the newborn. In essence, it would be the total care of the child’s body, mind and spirit, providing, in addition, adequate support for the family. These treatments can then be accompanied by medical interventions that could extend the life of the child. However, it is not always possible to know in advance which of the medical interventions will be the right one, since specialists will not always be aware of the real situation of the child. Anxiety intensifies considerably and with it many questions: “What will the birth be like?”, “Will the baby suffer?”, “How long will he survive?”, “Which treatments will be most suitable?”. Parents who decide to wait and follow the natural order of events live in an uncertainty that can be exhausting if not accompanied by adequate social and professional support. Here are some coping strategies (resources) useful for the couple:

  • Live one day at a time: it does not matter today which therapeutic intervention to choose, you can postpone the decision to the following days;
  • Follow the process in its naturalness: events will follow the natural course of things;
  • Let your baby guide you and not his diagnosis.

Emotions and Resources

Parents diagnosed with an abnormality will feel lonely and misunderstood, as if no one could really understand them. After the diagnosis, the most frequent emotions will be anxiety, shock and disbelief, which will gradually be accompanied by a sense of anger, frustration and guilt. The concern for the psychic and physical well-being of the child will be amplified, fearing the suffering if he were born alive and the pain if he were to be born already dead. This reality is very difficult to face, yet many adequately supported parents enhance their resources, and focus on the importance of welcoming, loving and helping their child in his or her life time.

Some resources that parents can activate are:

  • Create special experiences with your baby, memories and positive images: take pictures of him, even if he is stillborn, hug him and take care of him. Many parents who have shared this type of experience have faced grief more easily than those who have not been able to create positive moments of sharing with the child;
  • Take care of yourself: eating healthy and resting well will help you have more energy and tolerate stress better;
  • Being in contact with nature: the sun and outings in the countryside or in the woods are excellent natural reinforcements;
  • Pray / read sacred texts: if you are religious, this passage can be a source of inspiration and support;
  • Talking with your partner: listening and sharing will be beneficial;
  • Seek out a counselor or psychologist experienced in perinatal bereavement: speaking and expressing oneself are excellent reinforcements;
  • Share experiences with friends and relatives, do not be afraid to express your feelings even if not everyone will understand them;
  • Take the time you need: bereavement takes place from 6 months to 3 years;
  • Naming Your Baby: Even if he won’t survive birth, being able to call your baby by his name and hear others do it will gratify and respect his short life.

Communicate with others

It will be difficult, at first, still shocked and incredulous, to communicate to others what is happening, to find the right words when everything is wrong. Over time, you will be able to better face reality and explain what happened to loved ones. However, it is not always easy to open up and some couples will decide to communicate the situation and the consequent decision by letter or email.

Many parents find it useful to describe their days on websites, sharing with others who in turn will leave messages of affection and support, which can be read at any time of the day or night, to feel less alone. Sharing with parents who have gone through the same traumatic experience can also help you feel less abandoned. (In the CiaoLapo blog, for example, there is a special section, called “shooting stars”, which collects the experiences of parents who have received an unfortunate prenatal diagnosis).

Friends and relatives will not always understand our choices; if you are lucky, families and friends will support, even when they do not understand the decision. They will understand that it is important to talk about what happened and will focus on the needs of the couple; others, on the other hand, will choose the path of silence because they do not know what is best to do, or simply do not know how to do it, even if the love they feel is immense; still others may criticize the choice not to have an abortion, because they believe (naively) that in this way one can become too attached to the child and suffer further. Often, grandparents themselves will find it difficult to express themselves, they have lost a beloved grandchild and see their children suffer. They will not know what to say even if they accept the decision, while others will not know what to say perhaps because they disapprove of it. Very religious grandparents may be a priori against abortion and this could make future relationships difficult. It is good to remember, however, that in most cases their intentions are good.

Waiting for childbirth

It is important to think about what to do if your baby is born alive. Beyond the medical interventions mentioned above, it will be important to plan the quality of time to spend with your child. One can reflect on choosing a natural birth or a caesarean, in agreement with the gynecologist and with the mother’s state of health. In addition, it would be advisable to point out to the doctor that he will remain as alert and awake as possible in order to enjoy his baby. The father, for his part, will be able to cut the umbilical cord and together with his partner build special moments with the child: hug him, treat him, feed him with breastfeeding or bottle, take photos and build memories to be preserved over time. , make it known to your relatives and friends. If you are a Catholic you can decide whether or not to baptize the child, just as you should be allowed to perform the rituals of your religion. Some parents want to plan ahead, so as not to have to make decisions after the child’s death, others find it cruel to plan the life and death of their little one and often decide to focus on life time as long as the child is with. them and to postpone other choices until after death.

The moment the baby comes into the world, the parents will be happy and thrilled, despite the diagnosis. It is their baby and they are admiring it for the first time! Some parents, due to physical malformations of the newborn, fear what it will look like at birth. It is useful to help them to have a gradual contact with the child and as operators it is important to know that their child will still be beautiful in their eyes.

The emotions that will be felt in seeing the child are not to be feared even if they are discordant: it is understandable to feel happy and sad at the same time.

The sadness, fear and nervousness that anticipate the moment of death require support and empathy from the caregivers and relatives. It may be useful in this phase to have the support of suitable professionals, relatives and friends. Death often occurs in a different way from what we had imagined, it is important to remember that the child may have breathing difficulties, which does not necessarily mean that he is suffering, it is often more the perception of the parents than reality. Respiratory crises are part of the normal process of dying out, if you feel that your baby is in too much pain you can always ask for an opinion from the doctor or neonatal nurse. It should be remembered that the most important thing that can be done is to hold, love and cradle the child in its terminal phase. After death, it is normal to continue to hold him and take care of him. Gradually the color of his skin will change, as will his body temperature. Observing your child, even in this moment, is the last chance to build memories. Some parents will decide to photograph their child even if he is dead: there is nothing macabre about this, it is your child and you are free to create all the memories that one day could prove to be very important to us. Creating memories, taking photos, keeping the ultrasound scans or the birth bracelet, keeping the cards received from friends and relatives, means a lot to parents. The idea of taking pictures can also be very significant for those who have not been able to see their children alive at birth because they did not survive it. It should be remembered that, despite the high emotionality of those moments, when our baby is in our arms, we still have the opportunity to kiss, caress, swing and love him: this opportunity should never be denied, and if parents so wish, it should also be extended to family members and siblings.

The last goodbye is that of the funeral, feelings of pain, gratitude, relief, numbness, distance and awareness can all be present at the same time. We must not be surprised or frightened by these emotions, they are part of the “roller coaster” of mourning. We must have respect and empathy for ourselves and for what we are facing.

It will always be useful for parents to discuss the child’s pathology together with the doctors in due time, and any tests to be carried out. If an autopsy has been done, based on the result, it will be important to make an appointment with specialists to discuss any implications for subsequent pregnancies.

The days to come

As the days go by, the variety of emotions experienced will almost seem to multiply. For the woman, it should be remembered that:

  • A few days after giving birth, even in the absence of your baby, your breasts will be ready to feed them. This could make you feel angry and overwhelmed with pain;
  • After about 6 weeks it would be advisable to have a gynecological check-up, with pelvic examinations and general checkups;
  • The emotions will be more and more conflicting (guilt, sense of emptiness, anger, vulnerability) learn to give it a name, to read its intensity and give it a meaning;
  • Remember to talk to your older children about what happened, they understand how you feel, they understand that something is wrong, there is no need to lie to them. Children tend to believe that whatever happens is their fault. It is important to reassure them, to explain to them that mum and dad are sad because they miss their little brother or sister, but that they will soon get better and they have no fault; you will probably become overprotective of them and less patient, this may confuse them, but the time, honesty and security of your love will strengthen all of you;
  • Share emotions with your partner, he suffers like you and it would be useful to remind him that he does not necessarily have to be your support figure, it is right that he too gives voice to his pain. Sharing suffering is one of the hardest things. Do not increase the distances, but comfort one another;
  • Take your time: there is no a priori period to recover from grief, there are those who take 6 months and those who take 3 years to get closer to the feeling of serenity again;
  • Seek support: rely on professionals who are able to welcome you. Self-help and sharing groups are important experiences for the couple. Asking for help is not a sign of weakness. Over time, many parents will find it useful to get in touch with those who are going through their own pain, to lend them a hand, listen to them and support them;
  • Calmly and consciously think about when and how to plan for a subsequent pregnancy: no baby will replace what you have lost, and often the awareness of what has happened can make everything very painful and tiring. Evaluate the idea only when you feel really ready for it and have the right energy to face nine months of pregnancy and postpartum with a good level of serenity. The decision to have a new pregnancy after a serious condition of the baby is accompanied by worries and anxieties. Good genetic counseling will be helpful in providing all the information. It is important to remember that no counseling and no doctor can ever ensure 100% health or illness of a child, but having information to think about and margins of probability to consider can be a first step. In the event that during the next pregnancy you experience a state of frequent and intense anxiety and apprehension, you think intensely and painfully about the previous pregnancy and you have numerous fears that limit your ability to enjoy the relationship with your baby it could be very helpful. discuss it with the partner with the trained psychologist and with other parents who have faced a subsequent pregnancy.

It is difficult for a man to express his feelings about what happened, even more so than for a woman. Man often finds himself supporting his partner and having to continue the daily routine, even if he does not want to. He is unlikely to share his suffering with a family member or close friend, and returning to work will not make the situation any easier. Difficulty concentrating, poor motivation and difficulty in completing one’s tasks are encountered quite frequently.

In England, there are workplace counseling services offered which it would be helpful to turn to; in Italy there are specific associations offering this type of service. The request for help must never be postponed or denied: asking for help is a sign of responsibility and intelligence and in no case can it be considered a sign of weakness.

As for the woman, the return to work can be experienced differently, there are those who want to throw themselves headlong into things to do in an attempt to distract themselves, and those, on the other hand, have to make an effort to return to the normal work routine. and daily. It will be difficult to explain to colleagues what happened and it may be useful to ask a loved one to do it for you. It won’t be easy, but don’t expect too much, face it one day at a time and rely on the counseling services offered by your area.

Let’s reflect on the Support

Parents who have benefited from specialized support (counseling, palliative care) express appreciation and gratitude. Parents who, on the other hand, have not received such care or, in any case, adequate support in planning the birth, and who have become aware of this possibility only at a later time, usually feel cheated, angry, as if treatments intended for them had been of inferior quality.

Over time, it is useful, to feel better, to rethink the positive memories built with your child, finding meaning in honoring his memory.

As time goes by you will realize that your baby’s life has had a strong, positive and lasting effect on you.

You will always be the parent of the life born within you and no destiny can ever destroy the bond that united you.

A good sharing from diagnosis onwards of the whole experience with trained and welcoming staff and with the support of partner and family, regardless of the choice made, the “life time” of the child and the fact that his life was only in utero or even outside the belly make this mourning a greeting, albeit a painful one and not an abyss.

Bibliography

Amy Kuebelbeck, Deborah L. Davis, A Gift of Time, “The Johns Hopkins University Press, Baltimore”, 2011.

Joanie Dimavicius, Helen Statham, ARC (Antenatal Results & Choices), “Manson Group, Great Britain”

CiaoLapo onlus: Shooting stars: facing mourning after therapeutic termination of pregnancy http://goo.gl/qEVA1

http://www.anencephalie-info.org/e/anouk.php

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