Impact on the family

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).