For most people, having scans in pregnancy is just a routine and often exciting part of the process. For some however, a scan or other test will take you to a place you had never even considered. A baby with serious health concerns in pregnancy is a situation that most people have no reason to expect or anticipate. Such news usually brings shock, fear and confusion.
A baby with serious health concerns in pregnancy may have a very major abnormality of a major organ. The heart or brain may be incorrectly made or incomplete. Baby may not have developed their kidneys (renal agenesis), or parts of the skeleton are incomplete (such as anencephaly).
Most issues identified on scans are minor variations which will have little or no impact on baby’s life. Some issues affect the life that your baby will have (such as spina bifida). A few issues have such serious impact that the baby has little or no chance of surviving after birth.
In the UK the law supports parents’ right to choose to end the pregnancy in such circumstances, and it is the responsibility of healthcare staff to ensure that parents are aware of this option. It does not mean that such a decision is right for everyone. Ending a pregnancy in this situation is described in a number of ways , including termination for fetal abnormality (TOPFA) or compassionate induction. I will write another blog post about the decision to end a pregnancy soon. I support parents right make this decision if it is right for them.
What is not always well explained is the option of continuing the pregnancy, accepting and understanding the harsh truth of the situation, but waiting and sharing the natural course of the baby’s life with them. This time may only be during pregnancy, or it may be that baby has a short period of life after birth. Perinatal hospice is the concept of supporting the family during this time. Many midwives and obstetricians have no experience of this type of work. I am able to offer support and guidance both to families and to fellow professionals.
Perinatal hospice care is for a baby with serious health concerns in pregnancy whose life is expected to be short. includes planning for any interventions and additional tests or monitoring during pregnancy, planning for the birth and makes plans for the various situations which may occur. For example, is it helpful or not to check baby’s heartbeat during labour? The reason this is done is most labours is to provide an early warning sign that a baby may benefit from prompt delivery by caesarean section. If it is known that a the issues the baby already faces mean that they will die once born, it can be argued that there is no benefit to the baby of a caesarean birth and it would simply expose the parent to the risks of surgery. What, if any, medical interventions would be appropriate after birth? Would you want your baby to have intensive treatment such as mechanical ventilation if there is no realistic chance of him/her ever breathing independently? If your baby lives for a few hours or days, where would you want to be? Are there people you would want to share that time with?
Perinatal hospice is a concept rather than a place. The care and support can be in your own home during pregnancy and continue in a hospital or a childrens’ hospice such as Shooting Star and Chestnut Tree. You may want to read an account of such care in the book Waiting with Gabriel.
So many impossible questions, but ones which are valuable to think about. Clients I have supported have told me that making plans which covered the realistic possibilities have been extremely valuable. By making outline plans they have then been able to feel confident that they and the healthcare team are working together in the interests of making a short life as good as it can be.
Some years ago I worked with an expert team at Together for Short Lives to produce national guidance on perinatal hospice care. If you want to learn more the full pathway document is here .
Antenatal Results and Choices charity can be a useful source of information and have confidential forums through which you may be able to contact others who have shared the experience of a complex prenatal diagnosis.
I work across the south east of England to support families facing a complex diagnosis. An initial consultation by telephone or video link is always free of charge. I am sometimes able to offer reduced rate for ongoing care in case of financial need. Further consultations are usually in the family’s own home. Please get in touch if you or someone you care about is facing complex news and a heartbreaking decision about what is best for their baby. I will not tell you what to do, and I respect and support the decision that is right for you.