In the 'Passion for the profession' section, we ask (care) professionals what drives them to dedicate themselves to pediatric palliative care. This time we speak to gynaecologist-perinatologist Jan Jaap Erwich. Jan Jaap conducts research at the UMC Groningen into avoidable infant mortality, has a fascination for the placenta and is still touched every day by stories from clients.

Which case from the past motivates you to this day to dedicate yourself to pediatric palliative care?

“There are a few more every year. I remember well from my training period in Leiden a lady who finally became pregnant at a later age and eventually gave birth to a stillborn child. In the end, she never got pregnant again. I think her sister eventually acted as surrogate mother.

What touches me the most is the impotence and sadness of people. I do see a change in that. Thirty years ago there was a kind of resignation. There was no mention of infant mortality. People had to solve it themselves. A lot of people couldn't imagine it. Because, the child didn't live, so you can go back to work after three months, right? Fortunately, that has changed.

After the law was amended in 2018 and you can report your stillborn child, I have received eighty letters from people who are now much older and who lost their child in the 1950s. As they grow older, the memories of these events often come back stronger. They usually don't know if it was a boy or a girl. At the time they gave birth behind a cloth because it was then thought: that is the best, then there is no bonding. The opposite is true, we now know.

One of those letters is from an eighty-year-old lady. I invited her to the obstetrics outpatient clinic. Because we are an academic hospital, material is kept for a very long time. As a result, I was able to search and found another slide from the pathology department that contained tissue from this lady's stillborn child. They then put it in a box and buried it under a tree at their family farm. Then it was good. Stories like that give me chills.”

How did you get into pediatric palliative care?

“I may be a little bit the odd one out as a gynaecologist, but then again maybe not. My teaching assignment as a professor is namely the background of infant mortality.

During my education I was confronted with parents of children who died during pregnancy. Or soon after, which is called perinatal infant mortality.

Two things really struck me about it. Firstly, that an enormous amount of research was done into possible causes, but nothing came of it. The parents are left with questions: what, when, how, what are the recurrence rates? Secondly, the guidance of the parents that happens to them.

I was also interested in how the placenta works. We know that the cause of early death is often due to the placenta not working properly. All this has never left me.”

What is your next step in pediatric palliative care?

“One of the biggest problems in terms of infant mortality is serious birth defects. Three out of a hundred children have a serious congenital defect. Apart from taking folic acid, detecting it in time and - sadly - breaking it down, there is nothing we can do about it. The discussion about late termination of pregnancy and the acceptance of congenital abnormalities is different for everyone. At the request of the parents, we sometimes also terminate pregnancies in which the child 'only' has a cleft lip. You can easily repair that and you can grow old with it, but for those parents that is not acceptable. That manufacturability is an issue though. And also the question about guilt: who went wrong? That's what parents are asking more and more.

I'm in a pool of expertise for litigation. Oxygen deprivation during childbirth remains an important reason for disciplinary and compensation cases. The difficult thing is that oxygen deficiency cannot always be prevented. That said, we've also researched preventable infant deaths. This shows that in 10% of the deaths, our care was not good enough and contributed to the death. What is very topical at the moment: is an emergency caesarean section still possible everywhere? There are still hospitals where the necessary teams have to come to the hospital, while you have to be able to do an emergency c-section within half an hour.

As far as palliative care is concerned, it is very important that comfort care is carried out properly. For children who are born in the delivery room and who no longer have a chance, it is important that they receive the right comfort care. We have an average termination of pregnancy once a week around 20 to 22 weeks, due to a serious congenital defect. Important questions are: when do you call a pediatrician and are those people well prepared? I think we can still learn a lot about quality. Mainly because it doesn't happen that often. The most important message is therefore that we must make good agreements for the supervision of comfort care in the delivery rooms.”