You have heard that your baby will not be born healthy or may even die during pregnancy or around birth. Your doctor will then talk to you about the further course of the pregnancy:

  • You carry the pregnancy to term without medical intervention. If your baby has a condition that is incompatible with life, your baby will pass away either during pregnancy or shortly after birth. You can read more about this at My baby is dying and Stillbirth
  • In some rare cases, the baby can be treated in the uterus.
  • You’ll also have the opportunity to terminate the pregnancy. This almost always causes a deep and emotional struggle within yourself (and sometimes also between you and your partner). The baby is so welcome, yet you are letting it go. It’s an impossible choice. We prefer to think of it as a “decision made out of love” or “the lesser of two evils”. 

In the Netherlands, it is legally permitted to terminate a pregnancy within the term of 24 weeks. If you have heard during the 20-week ultrasound that your baby is not healthy, there is only a short time left to think about continuing the pregnancy. That makes it extra difficult. We therefore advise you to seek help with a medical social worker in the hospital or with a psychologist or general practitioner. It is very important that all wishes, possibilities, opportunities, but also your fears and feelings of guilt are discussed. In a few exceptional cases you may still terminate your pregnancy after the term of 24 weeks. It is best to inquire with doctor about this.

The birth

The doctors will discuss with you when and how you are going to give birth. In most cases, labour will be induced. This is not done through an IV, but through the administration of a pill or as a vaginal suppository that induces contractions. Sometimes, you will be asked if you want to insert the vaginal suppository yourself. This differs per patient and per hospital. You are also often asked to take a type of medication at home in the days before the birth to soften the cervix. This may be a difficult experience for you, because it will take you definitively down the painful path of termination. If you have had a Caesarean section before, you will likely be given a slightly lower dose of this medication. As a result, it may take longer before your baby is born in that case. You will no longer be allowed to go to the toilet from that point on, instead you will have to pee on a chamber pot (or potty) because your baby may suddenly appear. 

You will be asked to take contraction inducers every three hours until the contractions start. When the contractions start and how long the delivery will last cannot be predicted. Sometimes the contractions lose strength and often medication has to be administered.

You can always ask for pain relief, which could come in the form of an epidural or as morphine injections. Keep in mind that morphine can cause you to be a bit ‘out of it’, so you may not be fully ‘there’ when the baby is born. An anesthetist is needed to give you an epidural, and he will have to be summoned first. It may take a while before he gets there. When the delivery is almost over, an epidural is no longer an option. So if you want pain relief, it is best to indicate so in time and keep in mind that it can be refused depending on the stage of delivery. 

In case of premature delivery, there is a considerable chance that the placenta will not come loose and has to be removed surgically. It will be removed under anesthesia, for which you will have to go to the O.R. and your baby will remain on the ward. You can ask if the father can stay with the baby so that you don’t have to leave him alone.

In the first phase of childbirth, you will still be very lucid and you will be able to tell the nurse what your wishes are. We have listed for you what you could think of with regard to things you can discuss or ask for: 

  • Who’s going to be at the delivery? 
  • Special wishes regarding posture (bed, birthing stool, skippyball) and contractions (shower, bed, bath, music, light). 
  • Pain relief 
  • What do you expect from healthcare providers (midwife, gynaecologist, nurse)?
  • Photos and video
  • Seeing your baby after birth or not seeing it right away
  • Having your baby directly on your belly/chest after birth
  • Dressing up your baby
  • Washing your baby
  • Cutting the umbilical cord
  • Visitors after childbirth
  • View/Save Placenta
  • Are there any other things the caregivers need to know?
  • Contact with siblings. When do you want others to see your baby? Under which conditions? 

These points are also on this help card.

When your baby is born, of course you’d like to meet him: 

  • He can be placed on your chest right after delivery.
  • You can also wait a little while, and maybe ask people who are present at the birth to describe him first.

It’s important that you think about this because this moment will never come again. Most mothers like to have their warm baby close to them right away. Your baby will cool down soon after birth and won’t get as warm again as he was immediately after birth.

Your baby’s colour will in most cases be much darker than that of a full-term baby. Because the skin is still so thin, you can actually look right through it and sometimes even see all the veins running. The ‘water method’ is a great way to make your baby’s colour lighter again.  

Your baby may have died in childbirth, but he may still be alive. You can then see his little arms and legs moving and his mouth will open and close repeatedly. This is called “gasping”. Your baby is too small to really breathe. By tapping the umbilical cord, the doctor can see and feel if your baby is still alive. When the pulsating of the umbilical cord has stopped, your baby has passed away. This always happens very quietly. 

Because the skin of a premature baby is so fragile, it is better not to dress or bathe your baby right away. The warm water will wash away the protective layer, and clothes can stick to the baby’s skin, so you won’t be able to loosen them later on. Therefore, we advise you to wrap your baby inside the back of a cellular mat at first. This plastic sheet will protect your baby. In the days leading up to the funeral you can see how things go, and still choose to dress or wrap your baby based on that. If you have opted for the water method, you could still bathe your baby on the day of the funeral. You can then replace the cold water with warmer water and bath oil.

Taking your baby home

Many parents choose to take the baby home with them. This gives you all the time you need to take a good look at and “get to know” your baby and make memories (see help card making memories and days until the funeral).

When you take your baby home, it is important that your baby is kept cool. There are several ways to do this:

  1. Baby cooling
  2. Water Method
  3. Cooling elements

Investigation into the cause of death?

Often, when the pregnancy is terminated for medical reasons, the cause of death is clear. If the cause is not known, you can have your baby examined further. Read more about the different methods of examination here.

Donate to science

After a termination of pregnancy or a delivery before 24 weeks of pregnancy, it is not compulsory in The Netherlands to have your deceased child cremated or buried. Of course, doing so is allowed and parents sometimes choose it. It is also possible to have a cremation carried out by the hospital. This is done anonymously, but through official channels.
More and more often, however, we receive requests from parents whether they can donate the child for science, so that they can contribute to the accumulation of medical knowledge. Donating is now possible for several years.
This initiative started in 2017 from the Amsterdam UMC hospital, at its AMC location. Since then, children with and without a congenital anomalies can be donated, provided they are still alive at the start of childbirth. Children who are obducted after birth in order to make a certain diagnosis are not eligible. The aim is to investigate the normal and abnormal development of a fetus during pregnancy. The ensuing results provide insight into how (organ) development takes place and why certain abnormalities occur. Eventually, the knowledge gained will be used to improve pregnancy echoes so that congenital anomalies can be detected at an earlier stage. 
The protocol for this research has been approved by the Medical Ethical Review Committee of the AMC. This ensures that the examination takes place with care, respect and complete anonymity. There are no costs involved.
For the time being, the following hospitals have joined this initiative:

  • AMC – Amsterdam
  • Onze Lieve Vrouwe Gasthuis (OLVG East and West) – Amsterdam
  • Spaarne Ziekenhuis – Haarlem
  • Zaans Medisch Centrum – Zaandam
  • Ter Gooi Ziekenhuis – Blaricum 
  • Noordwest Ziekenhuizen Groep – location Alkmaar and Den Helder
  • Flevo Ziekenhuis – Almere 

If you would like to choose this option, or if you would like more information about this option, please discuss this with your own gynaecologist or send an e-mail to foetale.biobank@amsterdamumc.nl.

Research into termination of pregnancy and mourning

If you have decided to terminate your pregnancy, you and your partner may participate in research into termination of pregnancy and mourning.  Through this research, we want to find out more about the psychological and social consequences of terminating the pregnancy. We also want to find out which people are at risk of developing disturbed forms mourning or other complaints. Termination of pregnancy is a drastic event in life. As a result, some people will suffer from psychological complaints that can persist for a long time. What we do not yet know is which group of people has the greatest risk of developing these symptoms. If we know this, we can call in the right help at an early stage in order to prevent these complaints from persisting for a long time on a psychological and social level. In concrete terms, this will be a questionnaire that will be taken digitally at three time points: just after the termination, 6 weeks after the termination and 4 months after the termination. Each questionnaire will take 10 to 20 minutes to complete. Would you like to contribute to the knowledge on this subject, so that healthcare professionals can recognise who is vulnerable more quickly and call in help at an early stage? Then you can fill in this form and send it back to rouw@amc.uva.nl
Consent form in English 

Painful remarks

Parents who have had their pregnancy terminated do not always get the support they need. Some people make comments like: “This is what you wanted, isn’t it?” or use the term “abortion”. This makes you feel very misunderstood and alone. 

"At the time of the 20-week ultrasound, we'd already lost. It doesn't matter whether you continue to let your baby grow or terminate the pregnancy. On that day, right there with that message, a piece was lost that I'll never find again."

Sanne, mother of Jip and Mees*

"In practice we noticed that children are often left behind in hospital after a termination of pregnancy. Of course, everyone can find his or her own way in this and everything is fine, but our idea was that this is often a financial consideration. Perhaps people are afraid because the costs of a funeral seem like a high threshold. A funeral doesn't have to be expensive. You can set your own limits and you can bring in personal elements that don't have to cost anything. We recorded Mees' heartbeat and had it incorporated into a song. We played that on the farewell. That way we can always listen to the proof of his existence again and again. In the end, Mees' funeral didn't cost us much."

Sanne, moeder van Jip en Mees*

"In the days after the 20-week ultrasound, you hope "they" got it wrong, that your baby's just different or special. Not knowing (I thought) is much harder than knowing. The fact that the doctor took all hope out of our hands gave us peace... I really wanted to keep Madelief with me, but if she would grow bigger and stronger, she might have to fight for her breath or life, under the lights of the hospital and strange doctors around her. I saw that as an absolute "no". By terminating the pregnancy she could die in her familiar warm and loving world, without ever having to experience that cold hard world outside. The dangers of a full-term pregnancy for the mother were also considered (especially by the father). The fact that you decided for yourself, even if you didn't want to, and despite the fact that there is something wrong with your baby, can evoke shame and guilt. As if you weren't able to protect your child or something was wrong with you that made you make a 'failed' child. I didn't always say at first that Madelief had trisomy 18, I was ashamed. And later sometimes for the fact that she didn't seem welcome with her condition. I know better, but your feelings aren't rational, just as mourning isn't. "

Nina, mother of Madelief*