Photo: KinderPalliativTeam Südhessen

Following the diagnosis of a life-limiting illness in their unborn child, parents-to-be are confronted with the question of whether they want to carry their seriously ill child to term. The neonatologist and palliative physician Dr. Silke Ehlers from the Kinder Palliativ Team Südhessen (South Hesse Children’s Palliative Team), together with midwife Theresia Rosenberger and chaplain Anette Krüger, offer non-judgemental counselling to affected couples in this distressing situation and shows them possible alternatives to abortion. In this interview, the multi-professional team talks about the current challenges of their sensitive work and explains how they can support families as they make the remaining time with their child worth living as well as dignified.  

Being told their child has a life-shortening illness feels like a punch in the gut to expectant parents. How can you support couples during this difficult time?
Dr. Silke Ehlers: In our daily work, we meet mothers and fathers who are initially in an acute state of shock after the diagnosis. At first, they don’t know what to do next; therefore, they turn to us with their questions and worries. We support these parents-to-be in their decision-making process and inform them about all the available options – including alternatives to abortion. We inform them about existing offers of help and provide them with medical as well as spiritual counselling, especially if they wish to get to know their newborn and take them home with them – even if only for a short time – to live as a family. In doing so, we work closely with clinics and specialists. Our priority is always the best possible quality of life for the child and their family.

What principles do you follow when counselling the affected families?
Anette Krüger: We provide non-judgemental and open-ended support. Parents feel this when they come to us with their fears and worries. We do not expect a decision to be made at the end of our discussion. On the contrary, we are interested in illuminating all the options and showing that we stand with them – regardless of the choice they make. That is what makes our counselling services stand out from the rest.

How many enquiries do you currently receive?
Dr. Silke Ehlers: Since 2012, the Children’s Palliative Team has received regular enquiries from expectant parents who learn that their yet unborn child has a life-limiting illness during their prenatal care. For a long time, these enquiries were dealt with on a voluntary basis by members of the core team in addition to the palliative care of children and adolescents. At some point, however, it was no longer possible to do this on the side. Thus it became an independent project – a team within a team, so to speak, with a special mission and which has stood on its own two feet since 2020. In the meantime, we now receive between one and two dozen enquiries every year, although fewer during the Covid-19 pandemic.

Why is comprehensive and early counselling so important?
Anette Krüger: Above all, it is important that the parents can live with their decision in the long term. In order for them to be able to make such a decision at all, they need comprehensive information about possible alternatives. In this context, it is important to make the best possible use of the waiting time between the first suspicion and the diagnosis. Here again, effective networking among specialists plays a decisive role. They are the ones who recognise the families’ individual need for counselling and psychosocial support and can then put them in contact with us. We want to avoid situations where there is no time for in-depth discussions.

What are the uncertainties and fears that you regularly encounter when talking to parents-to-be?
Dr. Silke Ehlers: Following the diagnosis, it is not uncommon for couples to hear people say things like, “Don’t let your child suffer, don’t do this to him and to yourself”. How they react varies, of course, but we know that many parents initially feel completely lost and are so unsettled that some take such words very much to heart and make their decision on this basis. When considering a palliative birth, there is often the added concern of being confronted with the death of a human being for the first time and not being able to cope with it. The expectant parents are also concerned about how they will cope with their child’s severe disability if they continue to receive palliative care for some time after their birth. And, of course, they need to know that their newborn will not have to suffer unnecessary pain at any time and that the Children’s Palliative Team will take care of any symptoms that may arise.

Theresia Rosenberger: Many mothers and fathers are also afraid of how their child will look. In the past, people thought they were doing mothers the biggest favour by not letting her look at her baby at all after the birth and taking it away as quickly as possible. But the opposite is true: especially for parents of a seriously ill or recently deceased child, it can be very healing to see that their newborn looks completely normal and beautiful. This is a very important step for the subsequent mourning process.

What would you like the parents to take away with them?
Dr. Silke Ehlers: It is very important to us that the parents do not make a hasty decision. We try to convey to them that their child is not simply gone – not even if they are stillborn or die shortly after birth. Their child will always remain with them in their own way and may be given that space. Siblings, grandparents and other family members also need this. Their existence should not be hushed up – as is sometimes the case after abortions. That will catch up with the families at some point.

Theresia Rosenberger: I consider perceiving oneself as a parent to be just as central as consciously saying goodbye to a child. Of course, this also includes moving away from certain ideas and the ideal family image that usually arises when a couple consciously decides to get pregnant. A lot can be done to prepare for this because mourning begins with the diagnosis. We can give the parents concrete pointers and ideas, establish contact with others affected by similar circumstances and draw up a palliative birth and care plan together. If desired, we can also help the family to organise a farewell that suits them. Essentially, we want to relieve the mothers and fathers as much as possible in each of these regards so that they also have time for other things, for example, to process, in addition to all the organisational tasks.

What personal experiences give you the strength for your demanding job?
Theresia Rosenberger: What gives me strength are the many positive responses from the affected couples, the gratitude they show us and the feeling of having been part of this very individual story. I find it especially rewarding when the parents tell us that they made the right decision and would do the same again.

Dr. Silke Ehlers: For me, it is always touching to feel how determined these parents are and with what fortitude they follow their chosen path. We are always closely involved with this palliative care and are among the few people who are permitted to get to know the child. I experience this as a real gift that motivates me to overcome even the most frustrating experiences and to keep going.

What do you wish for the future?
Anette Krüger: I would like to see parents-to-be no longer being advised in such a directional way, as is often currently the case, and instead being shown all their options. However, for that to happen, society must broach the taboo subject of death and dying to an even greater extent.

Dr. Silke Ehlers: I would be very happy to see the attitude towards prenatal diagnostics open up a bit and the awareness raised that there is an alternative to abortion. But in order for that to happen, there needs to be a conscious discussion about disability as well as an acceptance of things that deviate from the norm and yet are natural. We would also like our services to become better known to the public and to professionals, which is something we are currently working on.

The Kinder Palliativ Team Südhessen (South Hesse Children’s Palliative Team), based in Frankfurt am Main, has been providing outpatient care and counselling to seriously ill children and adolescents in 14 of the metropolitan region’s districts since 2012. Supported by a multi-professional team of doctors, nurses and other specialists, it enables terminally ill children to spend the time they have left at home. In addition to seamless medical care in familiar surroundings, the young patients and their relatives also receive psychosocial assistance. Families who learn during prenatal diagnostics that their unborn child has a life-limiting illness receive the support of a specialised team from before the child is born and until the end, if desired.