Words such as profoundly handicapped, lethal or ‘incompatible with life’ may be used. Parents considering terminating a pregnancy must decide what is right for their family and their baby. It may help to talk to friends, family, doctors and faith leaders, before making a choice based on their individual circumstances. The grief suffered after a termination can be private and isolating and this is reflected in the few families who share their stories in the newsletter. All bereaved parents can place a Remembrance star for their baby when they register.

Facts about a prenatal diagnosis of Patau's or Edwards' syndromes
Parents will be offered a termination.
Parents may be advised to terminate the pregnancy.
Few pregnancies affected by Patau’s or Edwards’ syndromes result in a live birth.
Babies who survive birth rarely survive infancy and will have complex disabilities.

Provisional Data for Year Ending April 2009
The SOFT UK website shows a total of 629 prenatal diagnoses of Edwards’ & Patau’s syndromes with:
*   102 unknown outcomes
*   450 pregnancies terminated
*    49 still births, fetal deaths or miscarriages
*    28 live births

(The data has been reproduced with the kind permission of Professor Joan Morris from the National Down Syndrome Cytogenetic Register Annual Reports 2008/09)

Reasons parents may terminate a pregnancy
‘My baby could not survive birth. Scans showed severe defects’
‘Surgery would not be an option if my baby did survive birth.’
‘I was told my baby could suffer and be in pain.’
‘I wanted to avoid my other children being hurt.’
‘I could not have provided the level of care needed.’

SOFT UK Supports Informed Choice
When SOFT UK was founded, one doctor said it would not be possible to successfully support all those affected by these syndromes as their needs were too wide ranging. Parents with surviving children would not want to be confronted by bereavement, parents whose baby had survived birth would find it difficult to empathise with parents who had terminated a pregnancy, and parents whose pregnancy had ended early for whatever reason, would find it difficult to accept some babies survived birth and even infancy. 
At SOFT we hope that is wrong. Whatever the reality of our individual circumstances we are united by the way trisomy 13/18 shattered our dreams and the future of our child. Parents caring for a surviving child can understand the grief of parents whose pregnancy ended early or whose baby died in infancy, and those who have suffered a loss can appreciate the sacrifices of families who care for a child. At SOFT we can support each other.