Very few people have ever heard of hospice care for unborn babies. Children’s hospices such as Shooting Star hospice provide care for whole families when a baby or child’s life is expected to be short. Care is provided both in family homes and in residential centres, aiming to make a short life the very best it can be and helping the family to gather precious memories.
Perinatal hospice starts this care before the baby is born, following an antenatal diagnosis of very complex issues facing an unborn baby.
This beautiful short film shows how hospice care for unborn babies can be beautiful and life enriching
Together for Short Lives charity say “We want to help every child and family living with a life-limiting or life-threatening condition get the very best care and support they can so they can make the most of every moment together”. I am absolutely in agreement with that, so felt very honoured to be asked to become involved in the development of their national guidelines for perinatal palliative care. Perinatal means “around the time of birth” and so when an antenatal diagnosis is made it starts with hospice care for unborn babies.
Sometimes the knowledge of the life changing news will be found early in pregnancy. Conditions such as anencephaly are most frequently identified at the first trimester scan. Chromosomal or genetic issues may be suspected at that time and confirmed shortly afterwards. Other major life-limiting conditions may be identified at the mid pregnancy anomoly scan or even later. These include very complex cardiac abnormalities, skeletal dysplasia, brain abnormalities, absent kidneys and so on. In some cases it takes time for it to become clear how serious an issue is likely to be. In some cases it can be almost impossible to predict accurately how a baby will adjust to the birth process and life outside. A guiding principle for me is to prepare for the worst, but always hope for the best.
That “best” may be a baby who defies the predictions or may be a baby who lives for a few hours after birth. The best may also be that the family had time to focus on and cherish their baby during pregnancy, building memories and being mindfully aware of the days they did spend together, even though the baby wasn’t able to be live born.
Continuing a pregnancy in the knowledge of complex and life threatening issues is a really challenging path. It is not what most people (healthcare workers included) expect parents to do. To my mind it is correct that the legal option of ending a pregnancy is made clear to parents, but if the parent says “no- that is not appropriate or acceptable for us” that is where the discussion should stop. It should then become a conversation about what would be effective in supporting you. My role is to be there for you, sometimes guiding, sometimes supporting, ensuring that plans are made which reflect the uncertainty and your right as parents to make decisions for your child. I act as an advocate for you and your baby. Working in conjunction with the specialists in the local neonatal unit, the children’s hospice, faith leaders and so on, we can plan for pregnancy, birth and whatever comes next. We can have plans in place to manage any symptoms, to ensure that your baby does not suffer or feel distress. We can support your whole family.
I am running the London Landmarks half marathon on 29th March 2020 to raise funds for Shooting Star hospice, in memory of a very special little girl. If you would like to sponsor me please go here. If you want to know more about my work or know someone who might benefit from the involvement of a specialist midwife please feel free to call or email me at any time.