As birth and death coincide - Part Two

There are as well a whole host of practical problems, which are peculiar to the newborn death situation.

Firstly there are particular physical problems which may include the need to dry up the breast milk and/or deal with engorgement. 

The mother may also have a Caesar scar or episiotomy scar that needs treatment.

Secondly, once home, there may be sexual problems and the parents need to be counselled that it is normal and acceptable for one or both of them to have no interest in sex. 

'Sex' may be linked with “procreation” in their minds and some discussion around sex-as-love, sex-as-comfort, sex-as-procreation and sex-as-recreation may be necessary at some future stage.

The flip side of parents who don’t want to have sex are the parents who immediately try to have another baby. This is the so-called  ‘replacement child’ syndrome.

Some couples will verbalise the wish to immediately attempt a new pregnancy to replace the dead child.

Whilst this is perhaps, possibly,maybe  therapeutic in some isolated cases generally it only causes more problems as the dead baby has not been adequately mourned, and the new baby comes with a bizarre set of expectations.

The point needs to be made to the parents that each child is special and unique and that no child can be replaced by another, in the same way that a dead spouse cannot be simply replaced. 

People confuse “material” or “physical” replacement with “emotional” replacement.

Thirdly there are the ‘layette’ problems.

These are issues that arise from physical cues when the parents return home. 

In the first place they expected to return home as a family (or an enlarged family) instead of as a couple. The visual cues that remind them of both their childless state and the death may include a newly decorated nursery; a compactum full of baby clothes; a baby seat in the car; even something as mundane as hospital bills.

The response to the cues varies considerably  with some parents wanting to throw out all of the clothes and toys, whilst others choose to keep them.

There is no “correct” behaviour, only functional and ‘dysfunctional’ behaviour.For example the mother who a year after the death sits all day alone in the nursery is probably in a dysfunctional state and needs professional help. By contrast the mother who dusts the nursery once a week is exhibiting functional grief.

Fourthly there are a whole range of practical social problems about which the parents should be counselled.

These include both family and work-related expectations, all of which can have negative connotations for both the parents and their family and friends.

For example, the expectant grandparents feel cheated and sad. Sad that their grandchild has died and sad that their own children are experiencing such grief and pain.

Work colleagues, all of whom know how to respond to a birth have no idea of how to respond to the death;they may avoid the parents physically, or avoid talking about the event and the parents experience a distancing from their family and friends and feel isolated.

One of the major problems is, ‘how long do the parents need to mourn ? And how long does society give them permission to mourn ?  And how long do their friends expect them to mourn ?’

There are two fundamental  issues.

Firstly , in  a very real sense that the parents will mourn for all of the rest of their life to a greater or lesser degree.

Secondly is that in the acute setting, I believe that if it takes nine months for a pregnancy to come to term, then it takes at least nine months for the acute grief to be resolved.

Our social cues such as films, books and television would seem to indicate that a very short period of grief work is all that is required.

This is manifestly not true.

I believe that the parents often never stop mourning although the visible or outward expression of the grief will change as their internal response change.

But it is certainly not uncommon for the parents to be profoundly and visibly sad for a year or longer, in the acute phase of their grief work.

But “society” generally finds it difficult to deal with the death of a child, and so the parents are encouraged to “cope” with their “problem", that is, they are encouraged  to hide their feelings of anguish and to pretend that all is well. 

So the parents and grandparents walk around for years with hidden and silent feelings of sadness, anger, depression and despair, feeling that they are unable to ventilate and share their feelings.

There are a number of organisations where it is permissible to discuss childhood bereavement in a secure and supportive environment such as the Compassionate Friends, an international  self-help group.

In addition there are probably 'Mental health' services in most areas to which parents (or staff) could be referred. The only drawback to both self-help organisations  and formal Mental Health practitioners is  that they wait for the parents to come to them, for the parents to be pro-active, at a time when they have difficulty just getting out of bed in the mo.

The issue is really, do parents and staff have enough insight to realise that they need to seek help ?

And if they do have the insight, is there practical access to counselling in real time ?

Certainly within the EMS world, very few staff ever recognise that they are “burnt-out” or stressed until there is a precipitating event that sparks off some bizarre and disproportionate response. 

And for a lot of EMS staff , psychology, psychiatry and social work are generally all lumped together under a label of “witchcraft”!

One of the exacerbating problems of EMS services in South Africa, is the relative lack of skills and services-, and the 'infra-structural isolation' of communities. Additionally there is a lack of qualified staff in Casualty Units, and the distances involved in transporting patients are frequently vast. 

So whilst parents in Johannesburg may be told about the self-help groups; and may have resources to get to them, chances are that parents living outside of major urban areas will not be told about the services; and anyway lack the personal-, and financial-,capacity and  resources needed to access specialist services.

Fifthly, there are the other children, the siblings and cousins, waiting at home to consider.

The other children at home will be waiting for ‘mommy’ to return home with their baby  brother. And then she doesn’t.

And then no one talks about why there is no baby.

I believe that children have a profound understanding of death.

Always.

And as the child grows, so too does both their understanding of the event and their ability to vocalise and verbalise their feelings and expressions of pain and grief , loss and separation.

Beard says that  “factors such as age and conceptual understanding, emotional and financial stability of the family; support of relatives; individual personality; spiritual upbringing; and the circumstances surrounding the death, all play a part in the child’s ability to cope with it.”

Children must not be excluded from death.

Any questions that they ask should be answered at their level of comprehension, but honestly, and without using euphemisms such as “your baby brother has gone to sleep”;because euphemisms in children often set up other problems  such as the child developing an irrational fear of bedtime!

Parents and health-workers should look for non-verbal cues hidden within the child’s drawings or writings. And for verbal cues contained within ‘overheard’ language such as what the child says in his prayers; what he says ‘offhand’ in the shops, or in the sandpit.

Whatever the child’s age, it needs to be impressed upon him that he was not responsible in any way whatsoever for the death. 

Children often have feelings of omnipotence, and combined with negative feelings towards a potential rival for their parents’ attention, may feel some degree of responsibility for the death.

The easiest way for caring for the survivors is to include them in the funeral arrangements and planning and even in the service itself if appropriate. 

Fundamentally, children should not be kept away from funerals.

Only a generation or two ago, most children grew up in an extended family and saw-, and were aware of-, all the seasons of life and learnt how to deal with major-event emotions.

And of course they still do, if they live in a Second-,or third world environment.

The involvement can take several forms ranging from letting them buy a ‘special’ toy for the dying child, to allowing them to choose a name for their sibling.

A parent, writing about the death of her baby and the effect on her family says, “Melanie had brought one of her new toys, a pink fur mouse, to give to Andrew (in his incubator).This toy is still very precious to us, and is useful  for broaching conversations about Andrew”.

The parents should be encouraged to share their feelings with their children and to allow them to share their emotions with  the parents. 

Again absolute honesty is required Children are not easily deceived and cannot be totally sheltered from tragedy even if the parents try.

A child whom is misled or told nothing may later wonder whether other important matters are being discussed honestly, and feels alienated just as adults would. Parents should present the facts simply and clearly, taking in mind the age of the child.

Finally the parents need to be reminded that every single person will have a different response to the death, and will therefore have a different mourning experience-different in intensity, duration and expression.

They need to be told that it will probably take at least a year for the acute pain to pass, but that it may take 2-3 years. 

Gifford reiterates this point when she writes that “probably the most basic truth about grief is that it lasts for longer than most people think.(Further),grief is painful to witness, so, many people, not knowing how to ease the sorrow, expect the bereaved to put their grief aside,(easing everyone else’s’ discomfort) and get right back to normal. Of course, such sidestepping is not only impossible,…it is also inappropriate.”

And many people do not understand that the concept of “normal life” has been altered irrevocably for most  parents.

And so they need to be told that they will never forget their child although the expression and pattern of the grief will change.

Kenneth Strong, a Nurse whose youngest son died says, “We have now experienced two anniversaries, two birthdays and two Christmases without Tristam. 

I have disposed of all of Tristam's belongings, but in the bathroom his toothbrush remains. 

It is my last link with him,(and) I’ll probably never discard it. 

I was told that as the years passed I would forget the pain I experienced, but I’m still waiting.”