When we aren’t sure what is going to happen, some parents find it helpful to hope for the best as well as make plans for the worst. It can be helpful to talk about what might happen, as well as what we think is most likely.

Because we are not sure exactly what is going to happen, it can be important for us to have several different plans. We might need a ‘plan A’ for what we think is most likely, but then a ‘plan B’ in case that doesn’t happen. Sometimes we need a plan C and D as well. It can sometimes be very difficult to predict how long a baby will survive. It might be only a very short time, but sometimes it is longer. Sometimes babies surprise us.

A lot of families have this worry, which is understandable because the terms ‘palliative care’ and ‘hospice’ are often associated with death and dying, particularly in adult care. However, children’s palliative care teams and children’s hospices look after babies and children with a huge variety of conditions, and many of the children they see will end up surviving beyond childhood. Children’s palliative care is life-long supportive care and is really about helping to make your child’s life as good as it can be. If professionals are suggesting incorporating palliative care into your baby’s care, it may mean they are worried your baby may not survive, but it doesn’t mean they have given hope. They will simply want to ensure that you and your baby have the best support available.

Many families who receive a diagnosis during pregnancy of a serious condition in their baby will hope that the diagnosis turns out to be incorrect when the baby is born. It is very natural when faced with this incredibly difficult news to hope that there has been some sort of mistake. Scans and tests which are performed during pregnancy are not perfect and sometimes a baby’s condition will be more or less severe than predicted when they are born. Your medical team who are looking after you in pregnancy should be able to give you an idea of how certain they are about the diagnosis and if they will need to perform further scans or investigations when your baby is born. Sometimes it is difficult to predict how unwell your baby will be at the time of birth and what support they will need and the medical team will need to wait to make an assessment at the time. They should be able to talk through all the likely outcomes with you and answer any questions you may have.

This will depend on both your baby’s diagnosis and the mother’s medical history. You should have a discussion with your obstetrician to look at all possible options for delivery and the risks and benefits of these for both you and your baby.

The team should also discuss with you whether they plan to monitor your baby during labour for signs of fetal distress. For some families it may be important to ensure they have the highest chance possible of meeting their baby alive, and this may mean opting for a caesarean section if there is a high risk the baby may die during delivery.

Most conditions which require palliative care support are not painful or uncomfortable for newborn babies. One of the aims of palliative care is to ensure that your baby is as comfortable as possible for however long they survive. Palliative care teams have expert knowledge in what symptoms are likely to occur for any given condition and in providing treatment options to manage these. They should be able to talk you through what symptoms you may expect when your baby is born and can give you a plan for how these will be managed.  

Neonatal organ donation is rare but is sometimes possible. If you would like to discuss this option, there are specialist teams in each hospital who can provide more information around your baby's unique circumstances, and what organs or tissue they may be able to donate. Your neonatal team can refer you to these specialist teams. 

Under the Abortion Act 1967, in England, Scotland and Wales you can have termination of pregnancy up to 23 weeks and 6 days of pregnancy if two doctors agree that having an abortion would: cause less harm to your physical or mental health, or cause less harm to the health of your existing children, than continuing with the pregnancy.  

If test results or scan findings show a significant issue with your baby’s development, doctors may offer you a termination of pregnancy. This is because they have decided that there is ‘substantial risk’ that if the baby was born he or she would not survive or would have ‘significant handicap’. You can have a termination at any time in pregnancy under this clause of the law which is known as ‘Ground E’.

If your baby has been diagnosed with a serious condition during pregnancy you may want, or need to, wait until further along in the pregnancy to have sufficient information to make a decision about termination. Your medical team should support you with this decision-making.

Antenatal Results & Choices offer advice and support, including a helpline, if you have received a scan or test result during pregnancy and need to make a decision about what to do next.

What you tell other children will depend a lot on their age and how much they are able to understand.It is usually best to be honest with your other children. They will know that you are upset and stressed. Often, they have some awareness of what is happening, but they might not understand the details, or they may have misunderstood some things. They will probably be scared too, and what they imagine is often worse than reality.

You could ask them what they understand or have heard. You can talk to them about their feelings and about your feelings. Sometimes children can be worried that they will lose other members of their family, including their parents, and so it is important to reassure them.

Children’s palliative care team and children’s hospices are often able to support you in talking to your children and there may be supportive activities (such as art or music therapy) or counselling available to your other children if they need it.

 A child’s understanding of death and dying will change as they grow and develop. Younger children may struggle to understand death as a permanent thing. It is usually best to talk about death using clear and simple language and to avoid using phrases such as ‘gone to sleep’ which can be confusing for children and may cause them to worry. 

Child Bereavement UK have some excellent resources including short guidance films around children's understanding of death at different ages.

https://www.childbereavementuk.org/childrens-understanding-of-death-at-different-ages

Our resources & support section includes a list of books which may be a helpful way to start conversations with your children.

When a baby is expected to die around the time of birth, having opportunities to create memories and keepsakes can be important.

Making memories doesn’t always have to wait until a baby is born and some families may wish to make some cherished memories whilst their baby is still in the womb. This could be taking a walk together as a family, listening to a special piece of music or taking a trip together.

After your baby is born the team looking after you should be able to support you in creating mementos of your time together such as handprints and footprints, photographs and other keepsakes.

"Remember My Baby" is a registered UK charity which offers baby remembrance photography to parents across the UK who have experienced the loss of their baby before, during or shortly after birth.

Yes, you can spend time with your baby after they have died. In most cases you can choose how much time you want to spend with them, and you can do whatever feels right for you. You should have the opportunity to hold your baby, to take photographs and to collect mementos such as hand and footprints or a lock of hair. The teams looking after you and your baby will be able to support you with this. If you would like to help wash and dress your baby, you should have the opportunity to do so.

In some cases, it may be possible to take your baby home or to a children’s hospice to spend a longer period of time with them there. If your baby is to remain at the hospital, a nurse will take them to the mortuary when you are ready to leave. You should then have the opportunity to visit and bring family to see your child in the mortuary’s viewing room.

In some situations, additional investigations may be needed after your child has died such as a coroner’s investigation and this may involve the coroner performing a post mortem investigation. If your child’s death has been referred to the coroner, then you are not able to choose whether a post mortem examination takes place or not.

If a coroner is not involved, then a post mortem examination can only take place with your consent. You should have a full discussion with healthcare staff to decide if this is the right decision for you and your family. A post mortem investigation may help to understand why your child died.