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If your baby's future is uncertain or your baby is going to die

You may have been told that your baby's chances of survival are slight or that your baby will die. There may be uncertainty about what will happen at or after birth. Because of this uncertainty the pregnancy can become a very precious time as you forge a relationship with your baby. If this is your situation there are certain preparations you may wish to make. It may be upsetting to imagine the worst, but some parents say that preparing for their baby's death gave them something to focus on and allowed them a certain amount of control and choice in what was going to happen.

Some parents like to consider the kind of funeral arrangements they would prefer well in advance and think through ways of remembering their baby. There will be many choices open to you, either through the hospital or privately. Hard as it may be, thinking through what type of burial or cremation service feels right for you and making the necessary arrangements means you can be fully involved in decision making at a time when it sometimes seems that things are outside your control.

You may also want to consider whether you want to donate your baby's organs, which may be of help to another baby; or tissue samples, which would be used for research. Some parents find comfort in the thought that there may be some benefit to others from the loss of their baby, but it is very much a personal choice and may not feel right for everybody. This is something you can discuss at length with your consultant.

Your hospital will be able to offer various 'keepsakes' ranging from pictures, wrist and ankle bands to swaddling blankets and foot and hand prints. Don't be afraid to ask for whatever reminders you want. Whatever you choose to keep can then go towards making up a 'memory box' for your baby, to which you can add cards given to you by family and friends. As well as helping in your grieving process, your memory box is something that you can use with your other children to help them understand what has happened.

There will be other considerations if you know your baby is going to die after birth. You can state in your birth plan if you would prefer your medical team not to intervene unnecessarily. You may not want a medical team to prolong the life of your baby for too long if he or she is certain to die. You might prefer to care for your baby yourself with the support of your team. You should be allowed all the time you would like with your baby and can ask that other members of your family or friends visit you shortly after the birth. You can also take your baby home if you want to.

After your baby has died

You may be asked to consent to a post mortem on your baby. This is entirely your choice, but before you decide, talk over exactly what the procedure will entail and check whether information gained could be significant for future pregnancies. If you do agree to a post mortem it can take up to six weeks to get all the results through. Ask for an appointment with your obstetrician soon afterwards to discuss the report. Depending on the findings you may be advised to see a genetic counsellor to talk about the implications for future pregnancies.

Making Decisions

Working with parents who choose to continue an affected pregnancy is a new area for ARC; it is an area where there is little overall information and support available for parents. We welcome contact from such parents - for that is the only way we can truly understand the issues and concerns specific to your situation.

Please contact the ARC Helpline on 020 7631 0285.

Helpful Organisations

Details of organisations which offer support and advice for specific conditions can be found on our Links page