Continuing a Pregnancy

Continuing a pregnancy when 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 poor, or that your baby will die. There may be uncertainty about what will happen at or after his or her birth. Because of this uncertainty the pregnancy can become a very precious time.

If this is your situation, you might want to make certain preparations. 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. It allowed them some control and choice about what was going to happen.

Birth plans

If you know your baby is certain to die after birth, you may not want a medical team to keep him or her alive for too long or intervene unnecessarily.

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. You can ask that family or friends visit you shortly after the birth. You might want to take your baby home. You may even be able to give birth to your baby at home if you want to.

Even if there is a lot of uncertainty, making flexible plans with your medical team can help to ensure that you have some control and choice about the way that you and your baby are cared for.

Funeral arrangements

You may wish to consider funeral arrangements in advance and ways of remembering your baby. You will have many choices open to you, through the hospital or privately.

Atlhough it may be difficult, thinking about these arrangements and plans means that you are involved in making decisions about your baby. This can be helpful at a time when it can seem that things are outside your control.

Keepsakes

Your hospital will be able to offer you mementoes. These usually include photos, wrist and ankle bands, blankets and foot and hand prints. Don't be afraid to ask for whatever reminders you want.

You might find it helpful to put the keepsakes in a 'memory box'. Some parents also put in cards from family and friends and other things that remind them of their pregnancy and their baby. A memory box can help with the grieving process. If you have other children, it can also be useful in helping you to explain things to them.

Organ and tissue donation

Some bereaved parents choose to donate their baby's organs, so that they can be of help to another baby. Some donate tissue samples, which are used for research. You may want to consider these options in advance. It can be comforting to know that others may benefit from the loss of your baby. This is very much a personal choice and may not feel right for everybody. You can discuss this at length with your consultant.

Post mortems

You may be asked to consent to a post mortem on your baby. This is entirely your choice. Before you decide, you may need to know exactly what the procedure will entail and whether the information will be important for future pregnancies.

If you do agree to a post mortem, it can take up to six weeks or more to get all the results. Ask for an appointment with your consultant 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.

Further support

If you would like to speak to someone about these issues or it would just help to talk about how things are for you, please feel able to call the ARC helpline.

ARC has recently set up a moderated email support group for bereaved parents who continued a pregnancy with an uncertain or fatal prenatal diagnosis. If you would like to join this group or find out more, contact ARC.

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Continuing a Pregnancy