Introduction

Patau's syndrome (trisomy 13) is a rare condition, associated with high mortality, a range of congenital abnormalities, and severe physical and cognitive impairment. Many affected pregnancies will miscarry, and most babies born with the condition will not survive more than a few days or weeks. Less than 10% of babies with the condition will survive their first year of life.1

Parents who discover during pregnancy that their baby has a serious chromosomal condition such as Patau's syndrome suddenly find themselves on an unexpected journey away from their hopes for a healthy baby and a normal family life towards a new and challenging situation.

Many parents in this situation will decide to end the pregnancy, but a few will decide to continue. This is the story of one couple who discovered at the 20 week scan that their baby had Patau's syndrome, and decided to go ahead with the pregnancy. Baby Benjamin was born at 35 weeks and lived for three minutes after birth. Much of the story is told in the couple's own words, recorded in an interview three months after the baby's death.

This article draws on interview data collected in 2003-4 for a wider research project on experiences of antenatal screening, now part of the DIPEx website collection (personal experiences of health and illness; see www.dipex.org/antenatalscreening for other findings and video clips from the interviews). This research included people who had routine screening experiences as well as parents of babies diagnosed with a variety of conditions, some of whom decided to end the pregnancy and some to continue.

A journey interrupted: arriving at a crossroads

The couple had two other children and had been waiting until they had moved to a bigger house to have another baby. Thus they set off on a planned and much anticipated journey of normal pregnancy and birth. They …