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NOT ALL PARTNERS react identically to the heartbreaking news. After the initial shock, some believe it would be best for the whole family to terminate and get on with life, while others cannot imagine terminating a child they already love. Some need to talk about the child; others would rather not. The purpose of this chapter is to provide support for couples at a time when they may find their relationship is being put to the test and it may be difficult to reach a joint decision from a wide range of possible reactions and personalities.

It is well-known that men and women differ in many respects, particularly when it comes to emotional issues. For couples finding out their child has a poor or fatal condition, remember that if you reacted differently before the diagnosis, the chances are you will still do so afterwards. There is no right or wrong way to approach this difficult journey. Keeping the communication channels open and trying to reach such a major decision in just a few days may be the most challenging experience you will face in your paths of communication as a couple.

• When the time comes for both parents to discuss the options and/or the loss, here are a few tips to remember:
• Good communication skills are a mixture of expressive and listening skills.
• Give each other undivided attention (make sure no distraction will interrupt the discussion, such as the phone, television or other family members.)
• Summarise what each other has said, especially as the conversation gets tense or emotional.
• Use ‘I’ rather than ‘you’ statements.
• Use writing as a tool if you find it easier.
• Focus on the present (or future if appropriate) and try to avoid past disputes, while acknowledging that stress may bring past issues to the surface.
• Maintain respect and take breaks if you need to.
• Forgive each other for failings and mistakes.
• Don’t expect your partner to read your mind.
• Mostly, listen to one another, remembering that you are both suffering and that you love each other.

I would also encourage you to remember that as individuals, we all come with emotional baggage and past losses. We may still be dealing with some of these, which may render this loss even more complicated as emotions and issues become combined.

Father and mothers grieve differently:

• Some members of our former communities pictured vulnerable mothers shattered and strong fathers supporting their wives. There was a huge belief rooted in childhood that seemed to convey, ‘Fathers don’t cry, they don’t love their unborn children and their wives will crumble if they show any emotions’. As a result, many fathers still feel pressured to be responsible for supporting their families, and some of those mothers experience resentment when they believe that their partners are feeling no pain.
• While most women prefer to talk and express their emotions, many men choose to keep busy to avoid the pain, or because they may not know what else to do,  and while women may decide to talk about the problem, many men may attempt to ‘solve’ the problem in any way they can, which often puts the couple on different wavelengths. It is important to remember and accept that both parents love the baby and may have different needs at this point. However, it is just as important to understand the other parent’s needs in order to maintain a caring relationship.

Siblings

If we consider the impact of such a pregnancy on the siblings, there seem to be two elements:

a) their personal experience of losing their baby sister or brother

b) their experience, as your children, of living with your loss

I will try to explain each point in turn and its impact on siblings in more depth in this chapter. This chapter applies just as much to your anticipated loss in the pregnancy as to the loss of your child after birth, either through death or birth with a serious medical condition.

Children’s own experiences

As parents, we try to protect our children from pain and sadness even when it means trying to protect them from something as terrible as losing a sibling or helping them to adjust to having a new ‘special’ brother or sister. The truth is that no matter how hard we try, we cannot protect them from such a tragedy or trial. We can only attempt to make it as painless as possible.

Parents in this situation should try to remember that different children have differing needs, as do different age groups.

Children up to three years old

May not understand what is different but will sense that things have changed. Children under three years old may also feel scared because children in that age group have a strong need for routine and it is very likely that their routine will change to some degree, at least temporarily. They may also have a need for attention, such as hugs from their parents and reassurance. Children under three would not understand what ‘being dead’ or ‘special needs’ means.

Children aged three to six years old

This age group still does not understand what being dead or having special needs means but will realise that it is something that comes with sadness (especially in this case). Most children will wonder why the new baby was born in those circumstances and may think they have done something wrong. On the other hand, they may also believe that their sister or brother will come back or do everything like other children soon.

Children aged six to nine years old

Children in this age group understand death and differences to some extent as they may already have experienced it, sometimes through their pets dying, someone else passing away or seeing or knowing other ‘special’ people. However, they tend to need a simplified explanation of death or disability and often a simple and logical definition is enough. Many children in this age group, who experience death, start to be fearful of one of their parents (or someone close to them) dying.

Children aged ten and over

In this age group, children understand almost everything about death and special needs. They understand the concept of death being final and sometimes unpredictable, as well as the concept of having different needs and abilities, including when it involves the parents spending a lot of time with the sibling. They may also have a lot of questions about their death, the ‘after-life’ or may need time to themselves to adjust to their loss or new life. Children may express different degrees of grief as well as different ways of expressing it. Some children may show signs of regression, irritability, fears, inhibition, sleep or eating issues, while other children, especially older ones, may show anxiety and guilt patterns. Some may need to talk about their sibling’s birth or death, as well as other things linked to the experience, but may feel guilty about raising a painful topic with their parents, thereby purposely ignoring their needs in order to ‘protect’ their family.

Parents, grieving themselves, may be confused as to what to tell their children, once again thinking only about protecting them, and may use euphemisms or fabricate a nicer ending than the actual one.

• Avoid the words ‘going to sleep’, ‘going away’ as children may start thinking they (or someone they love such as mum, dad or other siblings) could also die in their sleep.
• It is also best to be truthful, as truthful as the child is ready for. In the long term, being honest with your other children will only reinforce trust and respect and then they will not resent not having been a part of their sibling’s journey.
• Try to allow them to talk about the loss. If you can’t talk about it, let someone else handle it.
• Tell them how you feel and how much you love them but also how sad you are and why you may need some time.
• Inform them about the new baby’s condition and explain the reality of what it involves, but also focus on all the things he or she will be able to do, all in a language that is appropriate to their developmental level, in a manner that they can understand.

Children’s experience of living with their parents’ loss

Not only may our children have lost their baby brother or sister as they imagined and expected him or her to be; they have also lost their parents (or at least our capacity to be parents) for a period of time. Indeed, many parents are thrown into a world in which they can barely breathe, let alone take care of other children, physically and emotionally.

No matter how guilty you may feel or how others may tell you ‘to get a grip’, finding it difficult to cope with your other children is normal. In fact, among all the testimonies I received, there were two main kinds of grieving reaction immediately after the birth or loss; some parents give their other children their entire love and attention and others cannot cope with anything resembling a child because they are grieving and cannot deal with extra reminders of their tragedy.

Again, there is no right or wrong approach and undoubtedly some parents would not fit in either of those groups. It is merely an observation that most parents losing children need time to adjust to their ‘new self ’ and it may involve detaching from or getting closer to their other children. Your parent-child relationship could also be temporarily affected. As mothers may be having trouble carrying on the ‘children and home’ routine, some fathers take on a larger role than usual. Some children react by being distant from one parent or extra close to the other one.

Another view is that seeing their parents distressed can upset children. I guess it would be beneficial if children did not have to witness full-on nervous breakdowns but it is totally unrealistic to expect children not to notice the sadness, the change in their routine and the morose atmosphere. Many specialists have stated that being honest and involving the child or children in their parents’ journey was the most productive way to ensure the family remained close and to learn to rebuild their life together.

They are many books available for parents, families and teachers to discuss death, special needs and related feelings to children. Depending on the child’s age, various activities can also be helpful.

In younger children, sand play, pretend play, telling stories, drawing or painting can be very useful in expressing their feelings. Older children might prefer to talk with their friends or family, write in a journal, read about death or the condition or spend time by themselves. A change in children’s habits is normal and is their way of grieving. Parents can expect their child or children to act differently and provide opportunities for emotional outlets. Having said this, when grief becomes threatening for the child or somebody else’s well-being, it is recommended that the family seek counselling (suicide threats, self-harm, substance abuse, harm to others, ongoing depression are examples of when this may be necessary).

In this chapter, we will consider questions that most families have when finding out that their child has a condition, as well as different options for the pregnancy. There are no right or wrong answers, just feelings that other parents have shared. It is important that parents know they have the right to ask any questions they may have, as well as have them answered.

Many parents have explained that they needed to explore all their options and physically imagine each outcome in order to be able to decide whether it was a plausible choice for them. For instance, parents might list options and their ‘pros and cons’ in terms of personal choices and capabilities. Before choosing anything, try to imagine this choice in the short term as well as in the long term. If the choice feels right (as right as it ever would when talking about foetal diagnosis) both in the short and long term, you are more likely to be content with your decision.

How will the pregnancy be affected?

In many instances, the pregnancy is looked at differently from other pregnancies, although generally little or nothing is wrong with it as such. In some cases, the mother can carry on like any other mother with only monthly check-ups. The child, on the other hand, depending on the condition, may need scans and other tests to determine the next course of action.

From an emotional point of view, the pregnancy will most likely be challenging. Indeed, stress and other factors will very likely make the mother very tired, upset and ultra-sensitive.

How will the baby be affected?

This is certainly an essential question. Different diagnoses have different outcomes and parents have different levels in terms of what they can handle physically and emotionally. This question is especially important for parents expecting children who will live with ongoing symptoms.

Will my baby look different?

This is a question that may really worry and even haunt some parents. They may imagine the worst possible scenario that will traumatise them and their other children for life. You have the right to be prepared for differences and to expect medical staff to discuss them with the utmost respect.

Will my baby suffer?

Ethically, this is an extremely difficult question to answer on someone else’s behalf, especially babies who cannot express themselves verbally, although pain relief will always be available at birth if your baby seems uncomfortable. Most often, however, each condition comes with different concerns and the medical staff should be able to meet your child’s needs. For many conditions, the concern is essentially that the baby does not suffer but, once again, your specialist should be able to tell anything that you wish to know.

How likely is the next child to have the same condition?

Some conditions are genetic; others appear early in the pregnancy, as what I call ‘random development’.

In both instances, parents have the right to be referred to a genetic counsellor, who will explain the condition and the likeliness of its recurrence in subsequent pregnancies. In the case of an autosomal recessive genetic condition, the recurrence is often a one in four chance with each pregnancy.

What are my options?

The laws regarding termination vary from state to state and from country to country. In states and countries where termination is generally illegal, hospital boards or committees decide on a case-by-case basis whether it is an option that they can offer the mother. For fatal conditions and in many places, there are usually few difficulties in obtaining a termination. The gestation of 20 weeks is considered a cut-off point because babies under 20 weeks do not need to be registered. Once again, this cut-off point varies from state to state and country to country.

• Mothers have the choice of inducing labour before the baby would be legally viable. Babies usually die during labour, as they are too young and too fragile to survive the labour.
• They have the choice of terminating the pregnancy by injecting a drug into the bloodstream, which will stop the child’s heart, and the mother then proceeds to a vaginal delivery by induction. This technique is used if a decision is made close to 24 weeks of gestation when the baby might be born alive. If unable to access a termination publicly, the parents may be referred or ask to be referred to a private clinic or to another hospital or state. Similarly, if you do not want a termination but feel unsupported you can ask to see another doctor or hospital.
• Mothers can decide to continue the pregnancy for as long as possible and have their child naturally. If born after 20 or 24 weeks, depending on your country, the baby is given a birth certificate and would receive a death certificate and treatment (if possible) is given. Even if your baby is less than 24 weeks old, you can choose to have a funeral and name your baby. This is very much a matter of personal choice.
• Where the child does not have a fatal condition and will live, some parents may feel inadequate caring for him or her and, while they may have refused an abortion, they may not be certain of keeping the baby either. Adoption, respite care, foster care, sharing family care or placing the child within a special boarding school may be options for some families and are worth considering before any assumptions are made as to what can be offered.

Doctors, case managers and counsellors may be able to help you to explore what is the best option for you. Once again, there is no right or wrong answer. It is about living with a choice that suits you as parents. I would like to stress that whichever solution you decide on, there is always likely to be someone who will criticise you for the choices you have made. This is usually someone who has never come close to a making a similar choice and it is important to be gentle on yourselves. In every case, you have the right to a second opinion or a referral to another doctor. If no doctor in your area is willing to carry out your choice, the doctor you see still has a duty of care to explore options for you. This applies whether you wish to terminate or continue your pregnancy.

For many families, finding out about their child’s condition means hearing medical terms, stereotyped jargon and, for most of us, being talked to in a foreign language. Many have described the day of receiving the diagnosis as like being in a beehive; lots of buzzing and running around, but no recollection or comprehension of what was really happening.

On finding out their child’s condition, parents have the option of finding out more about the diagnosis and trusting their doctor with the condition or choosing not to know anything about it. Considering that most parents will be given a choice to continue or to terminate the pregnancy at this stage, many mothers and fathers want to know what they are ‘up against’ in order to take such a decision. For other parents, knowing about the condition is not about deciding whether to continue or terminate the pregnancy but whether they are prepared to care for a child with special needs or to evaluate the baby’s chances of survival.

Regardless of these reasons, it is important for parents to know where they can find information about their child’s condition.

• Encyclopaedias and dictionaries are always a great resource to begin with. They will give you a basic definition of a specific term used by the doctors and definitions of ‘common’ conditions.
• The internet can be the most efficient way to find information quickly, but beware of unwanted or inaccurate search results. For instance, typing a word could bring you an enormous list of documents including medical reports and fabricated articles. A useful way to search for helpful information is to type in a general search term, e.g. ‘what is Potter’s syndrome?’ and to look for web page results rather than just website results. Indeed, when you do a search for websites, the search engine will look for specific words within a website description.
• Your national organisation for specific types of conditions (Kidney Foundation, Spina Bifida Association, etc)
• Medical specialists and local support groups

There is an approximately 20% chance of being diagnosed a ‘high-risk’ mother to-be in any given pregnancy. The psychological and social impact of such a diagnosis can be tremendous, especially if it recurs after each pregnancy or has had a critical outcome, such as a disability or death of a baby.

The first thing to consider is the amount of stress a mother, her partner and the other family members may experience as a result of the condition. For instance, it may be that the things the mother used to do within or outside the house can no longer be managed. Often tasks such as housework, grocery shopping, paying bills, child-care and other general housekeeping have to be split with the rest of the family, bringing stress, anxiety and re-organisation. Financial constraints may also arise. For example, the mother may have to give up work for a while and may not be entitled to paid leave or may receive a lower benefit payment. Also, from an emotional point of view, the parents may also experience distress or fear of something happening to the baby while feeling angry and frustrated about the situation. Alternatively, it is not uncommon for some parents to try to diminish the potential impact of a high-risk pregnancy by carrying on just as before.

Family members may experience a range of feelings, from denial to blame, guilt and a sense of failure or ambivalence. In some circumstances, denial is potentially harmful to both mother and child. Certainly, some parents may react with disbelief to the diagnosis and continue to run the household and carry out work or other activities just as they did before the pregnancy. Guilt can affect either of the parents; the mother may feel guilty if it is her health that is the source of the risk or the father may feel guilty if he feels he is responsible for the pregnancy. The perception of ‘failing’ in the pregnancy may be problematic if either of the parents associates successful childbearing with success as a man or a woman, husband or wife. Indeed, they may lose confidence, self-esteem, stop trusting their bodies or themselves and may even imagine that everyone around them also regards them as a failure. Another common emotion for the family experiencing a complicated pregnancy is ambivalence or mixed feelings. For instance, the mother may feel worried for her child while also feeling angry with him or her for being the ‘basis’ for the current situation or complications. The father may feel sorry for his wife who is forced to rest in bed, but also feel resentful towards her for having to do all the chores after coming home from work. Similarly, the children may feel happy to be involved in the ‘team work’ while feeling bitter about the new sibling and all the attention around him or her. These are only examples of how the family dynamics may be affected by any enforced changes in family life or its routine following the diagnosis of a high-risk pregnancy. In order to assist with such stress factors and to prevent major crisis within the family circle, here are some suggestions that were found useful by other mothers in similar situations.

• Approach your hospital team – obstetrician, midwife, paediatrician, chaplain, nurses and counsellors beforehand – introduce yourself, and get to know them.
• Have an ‘emergency’ plan ready, in the event that you have to be hospitalised:organise and list who would pick the children up, provide meals, do household chores and so on.
• Learn about your condition and inform your family.
• Employ a cleaner, babysitter or gardener to suit your needs.
• Rearrange family activities according to your health requirements or the instructions of your obstetrician (play games together on the bed for the bedresting mother or watch movies or reading books rather than playing outside for the mother who has to sit).
• Make plans as a family for things you will do after the baby comes home (for example, holidays, rearranging the children’s rooms or shopping trips).
• Relaxation exercises
• Quality time with each family member.

This page is dedicated to all the parents who just received devastating news.  You may be faced with many options you had never heard of previously. You most likely have been thrown into a world you assume was only for others.

We don’t have the answers. Hopefully, Knowing that other parents have been there and how they coped may be useful to you.

I would encourage you to get a hold of “High risk pregnancy and Foetal diagnosis which is a book I wrote after my own experience with carrying Talina to term. It is a simple companion written by parents for parents and provides testimonies, practical and emotional support.  It can be found from Free Association Books and is available from CAPERS bookstore, AMAZON, Footprint, FAB and most online Bookstores.

Emotional and social issues of a high risk pregnancy

The Bombshell (finding out about the diagnosis)

How to find our more about the diagnosis

Questions, options and decisions

Impact on the family

Friends and Strangers

How to enjoy your pregnancy

Creating Memories

Funeral options

“I finally accepted that I couldn’t save my baby and that she would die. But there was one thing I could for her and that was to let her die in my arms. That, I could do for her”

Finding out that your unborn child may have a serious or life-threatening condition may come as a shock to say the least. If you are not in the high-risk category, the shock may be even greater. Many of the parents who receive such terrible news every year are relatively healthy parents between 20 and 30 years old, living a wholesome lifestyle, many of whom have had other perfectly healthy children before receiving this diagnosis.

The parents who provided their testimonies explained they felt as if they had been thrown into a world they assumed belonged ‘only for others’. What should have been one of the happiest moments of their lives had turned into a shattered dream.

In order for parents and the community to make sense of the intense feelings that may follow such a diagnosis, it would be helpful to learn about, pregnancy attachment theory. Kennel and Klaus (1976) described nine steps that occur in pregnancy to explain human attachment. Understanding that most of these steps occur even before the birth of the baby can help us to acknowledge the grief issues that accompany the premature death of an infant or the loss of the healthy child that we had in mind.

• Planning the pregnancy
• Confirming the pregnancy
• Accepting the pregnancy
• Feeling foetal movement
• Accepting the foetus as a person
• Giving birth
• Hearing and seeing the infant
• Touching and holding the infant
• Caring for the infant

The first five steps occur before or around 20 weeks of gestation, which is currently about the time that most parents discover that their child has an abnormality. Most parents have already made plans, named their child, announced the pregnancy to their family and friends and imagined their life with the new baby by that time. Sometimes the child has a condition that is not lifethreatening but involves a lifetime of special care and special needs.

How can parents be expected simply to forget, and to make vital decisions involving the life and death of their child in just a few days?

Many parents have described feeling an awkward sensation of grief while their child was still healthy in the womb, while others even felt guilty and didn’t understand why they would grieve for someone who was still alive and / or a child that would live. This is called anticipatory grief.

Indeed, your child is still kicking and is seen as ‘normal’ but you know that this will come to an end. You may be anticipating the next few months and starting to experience grief-like symptoms (Geldard, 1989). These may be:

• Emotional (sadness, anger, depression);
• Mental (preoccupation with thoughts of the baby, fantasies, fear of going crazy);
• Physical (aching, emptiness, lack of strength, palpitations);
• Social (desire to be left alone, problems communicating, difficulty planning the future).

Although parents experience one primary loss in losing their baby or their dream baby as they imagined him or her, they in fact experience multiple ‘secondary’ losses (loss of their ideals, loss of hope, loss of their family, loss of innocence, loss of security, to name just a few). The pattern for many parents is the same as the one they will experience after the birth of their child; they go through stages of grief. Elisabeth Kübler-Ross (1969) identified five distinct stages of the grieving process: denial, anger, bargaining, letting go and acceptance. Research has shown that it is possible to go through those stages in any order or to go back and forth between stages. It is also imperative to keep in mind that not everyone will reach the acceptance stage.

• Shock (sudden numbness, inability to function normally)
• Denial (disbelieving the diagnosis, trying to find a solution)
• Guilt (the parents may wonder what they did, perhaps ate or drank, to make their baby sick)
• Anger (parents may be angry with the medical staff for what they did or did not do, or with friends for smoking in front of the pregnant mother etc.)
• Acceptance (the parents may come to terms with the diagnosis, decide about the funeral or special care the child will need).

‘Anticipatory grief is more than just pre-death grief symptoms over a few months. It is a journey towards the ultimate loss but is composed of many losses of the past, present and future’ (Gilbert, 1996, p. 269).