Perinatal Hospice Care
If your baby’s lifetime is expected to be limited by health issues, perinatal hospice is care which starts before birth and informs decisions about care after birth.
It is a concept rather than being a place.
Most people are aware of hospice care for adults, usually associating it with end of life care for people with advanced cancer. Children’s hospices are designed to ensure that short lives are the very best they can be and are places filled with love and laughter as children share precious time with their families. They also provide support to families caring for their children at home.
The central principle of a perinatal hospice approach is that this short life should be the very best it can be. For example, considering in advance whether or not admission to a neonatal intensive care unit is likely to be appropriate. If active treatment is not expected to be beneficial, the short time of a baby’s life may be better spent in their parents’ arms. By making plans about “what if” in advance which are shared by the wider healthcare team, interruptions to precious time after birth with your baby can be kept to a minimum.
Angie can support you through this journey, providing midwifery care and advocacy for you and your baby, and enabling you to access the care and support which you believe to be best for your child. Angies encourages a parallel planning approach which acknowledges the uncertainty which often exists about how a baby will cope with life after birth. Parallel planning hopes for the best, and plans for the worst.
In 2017, Angie worked with Together for Short Lives to develop national guidelines for care of babies expected to have very short lives. This identifies the complex multi-disciplinary working that should be undertaken to ensure best care for babies and families. This type of working is extremely complex and Angie is able to undertake this liaison with all the relevant services on your behalf.
Angie has co-ordinated care where she has attended at the birth and then arranged for the family to move to a childrens’ hospice a few hours after birth. This provides a home-from-home care environment for the whole family with expert staff to support baby’s health needs. Some babies have died after a very short time, others have been able to go home to live with their families with a package of support, returning to the hospice at times for additional support.
Related conditions: Trisomy 18 (Edwards syndrome), trisomy 13 (Pataus syndrome), anencephaly, skeletal dysplasia, Jeune syndrome, brain abnormality, Joubert syndrome.
Speak to Angie
60 Ockley Way
Keymer BN6 8NF
Angie Bowles, specialist midwife supporting choice. Reach out for help or advice today. Angie reads and replies to every one.