When a child dies: How bereaved families can find support

Mira* dies on a Friday lunchtime. Peacefully and without pain, the two-year-old girl, who had suffered from a rare genetic disease since birth, fell asleep in her cot at home. «You chose the perfect time,» the parents write in their farewell letter to their daughter. «We were alone as a family and were able to say goodbye to you in peace. Your brother checked to see if you were still breathing. Mummy and Daddy bathed you for the last time and your sister chose your clothes. You looked beautiful, like a little angel.»

In Switzerland, around 400 to 500 children between the ages of zero and eighteen die every year. Around half of them die in their first year of life. Accidents account for almost half of all deaths among schoolchildren and adolescents.

The fact that the last day of little Mira's life went so smoothly for the family cannot be taken for granted and is thanks to two women in particular: palliative care doctor and paediatric oncologist Eva Maria Tinner, 47, and funeral director Eva-Maria Finkam, 46.

Only a few children die at home

«Losing a child is like jumping over a cliff - a fall into the abyss,» says Eva Maria Tinner when we meet her and Eva-Maria Finkam at the undertaker's house in Attiswil BE. The two women met at a professional conference four years ago and quickly realised that they shared the same values and experiences in their day-to-day work.

It makes a big difference whether this jump takes place with or without a parachute, i.e. well accompanied or completely disorientated. «In our work, we experience every day that well-informed and well-supported relatives can go through the dying process and the funeral time stronger than before,» both women agree.

This would require a seamless care network of specialists, especially if parents decide to take their child home to die. Unfortunately, this is often not the case, says Tinner. Fewer than one in five children die at home, according to the Pelican Study, the first comprehensive study on the situation of dying children in Switzerland.

The experience of the doctor, who works at the Inselspital in Bern, shows: «Children want to die where they are most comfortable and, if the circumstances allow and their parents are confident, that is usually at home with their family.»

Enlightenment instead of repression

This is where a balancing act begins for parents with a terminally ill child. On the one hand, they don't want to give up on their child and often believe in a miracle right to the end. «That's good and right, because hope is an incredibly powerful force without which such exceptional situations can hardly be overcome,» says Tinner.

On the other hand, in a palliative phase of the disease, i.e. when it is highly unlikely that a cure can be achieved through treatment, it is extremely important to consider the quality of life of the child and their relatives. «We would do well to pack an umbrella when we travel to London. That's why I talk openly with affected parents about dying, their worries and fears and the possibilities of palliative care.»

The doctor also talks to the parents about ambivalent feelings such as grief or anger while the child is still alive, about the fear of «magical thinking», i.e. not being allowed to think about death because otherwise it could be actively invoked, or about islands of respite in what for outsiders is an unimaginable feat of strength that parents perform between work, household, terminally ill child and possible healthy siblings.

Eva Maria Tinner shows how a network of trusted specialists can be organised, which medication can prevent suffering in the last days, but also how a dying child breathes.

«Education is better than suppression. Anyone who goes into the dying phase completely unprepared is usually much more overwhelmed.» Eva-Maria Finkam is also mentioned in such conversations. Born in Bern, she started Sternlicht Bestattungen in 2016, specialising in funerals for children and young people.

Consciously organised care for the dead

Eva-Maria Finkam, who started her career in a traditional funeral home, soon realised that the needs of such families are different to when an 85-year-old grandmother dies. «It's an incredibly delicate and intimate space,» she says. Unfortunately, many bereaved parents don't know what options are available and what is allowed.

For example, in the case of stillborn children, to take them home again, have them photographed, cut off a lock of hair or make a plaster cast of their foot. «What is right for one family is not for another. It's a very individual and personal decision,» says Finkam. During the consultation, she therefore carefully clarifies what a family wants to do themselves, where they want to be involved and what they want to delegate.

The funeral director's experience shows that Through the outward, consciously organised steps of caring for the dead, people take the first inner steps towards a healthy grieving process. «For me, the focus is always on strengthening self-efficacy and thus stabilising the family.» She boards the family ship like a pilot and guides it through the storm of the funeral period. But the family always remains the captain.

«We only regret what we didn't do»

There is no golden rule, says Finkam. Some parents wish to say goodbye at home, others in hospital or at the crematorium. Some appreciate the only offer in Switzerland to be able to travel in their hearse, which has been specially converted for this purpose, and thus give their child their last farewell.

There are families who don't want to be there when the coffin is carried out of the house. In the meantime, they go into the garden and let butterflies or sky lanterns fly for their child. Or they sing the child's favourite song, pray or go into the forest and light a fire. «The design options are as varied as the wishes and needs of the families,» explains the funeral director.

Informed parents are increasingly reverting to the old funeral culture of laying their child to rest at home for a few more days so that family and friends can say goodbye in peace. «The days between death and burial are incredibly precious. Whether you consciously lived those days and not just survived them has a lifelong effect. In retrospect, the only thing you regret is what you didn't do,» says Finkam.

Involve siblings

It is particularly important to Eva-Maria Finkam that siblings are not excluded, but included in an age-appropriate way. When the undertaker visited Mira's family for the first time, the parlour door remained open. The older siblings were there, popped in from time to time and went back to reading or playing. «Everything was open and calm. That gave the children stability. Making things taboo only unsettles them,» she says. Siblings also find support by actively participating in the farewell and, for example, choosing the colour of the fabric for the coffin or painting the urn together.

I am amazed at how our children dealt with the death of their brother. When they were allowed to help design the coffin, they really blossomed.

A mourning mother

The words of another bereaved mother, who wrote in a letter to Eva-Maria Finkam, show how valuable this involvement can be: «I am amazed at how our children dealt with the death of their brother. They really blossomed when they were allowed to help decorate the coffin. I am also grateful that we were able to lay our son out in his bed at home. His siblings kept going into his room and were able to understand his death step by step. With their natural way of dealing with it, the children were a role model for us and those around us.»

«We have been given a wide heart»

Elsewhere, the same mother writes: «When I look back on that time, I am reconciled. We wouldn't do anything differently. You motivated us to listen to our hearts. At the wake in my deceased child's room, I found peace and tranquillity. That helped me to find a balance between organisation and mourning these days.»

She also learnt how important self-determined death care was when talking to other parents who had also lost their child and were not allowed to experience such support. «They regret things. This makes them feel blocked in their grief.»

The sheltered process also gives the family ground in the time after the funeral, during which Eva-Maria Finkam organises professional support on request. Ground for grief, which comes in waves and is nothing negative. «Life includes light and shadow. We have learnt that the shadow has its value. Things become visible in the shadows that you can't see in the light. We have changed through this time. We have gained a wider heart,» the grieving mother notes.

Mira's family share a similar experience in their farewell letter: «Mira taught us an incredible amount. We grew beyond ourselves for her and were able to discover a strength in ourselves that we would never have thought possible. We feel much more gratitude and humility for all the beautiful things in our lives.»

*Name known to the editors