About 1 in 10 babies diagnosed with Edwards' syndrome or Patau's syndrome will be born alive. Doctors no longer assume the long term prognosis justifies non-intervention, and some parents will want to do all they can to enhance whatever chance the baby has of even limited length and quality of life - this can include opting for a Caesarian, or letting nature take its course. Many expectant mothers write a birth plan to take into account any decisions that may need to be made quickly.
Many babies born with Edwards' syndrome or Patau's syndrome will spend some time in a neonatal care unit. Many families find this a distressing time. Some parents find it useful to spend a bit of time before their baby is born reading about what to expect in a neonatal unit.
* The Bliss website has a comprehensive section on what to expect of your time in hospital covering topics including:
* The Children's Hospice Association Scotland (CHAS) and NHS Health Scotland have prepared a briefing paper for professionals involved in the care of babies in neonatal units. The paper offers guidelines to professionals when supporting families with babies in neonatal care to provide help and tips on bonding with their child. It can be downloaded free from the CHAS website.
The authors of the paper state that even when a baby requires palliative care, opportunities for developing a secure attachment "can help improve the quality of a baby's life as well as creating positive memories for the parent of caring for their child and being a parent".
The report covers three key areas:
- Building supportive relationships with parents
- Communicating with parents
- Creating opportunities for parents to interact with their baby