NU3104 Few of the babies born with Edwards syndrome live long beyond birth, but some may survive beyond their first year.

Susan is a deaf pregnant woman and uses ISL for communication. From her experience of her previous pregnancy three years ago, Susan generally texts her midwife to check that ISL interpretation services have been booked for her prenatal appointments. However, when Susan was called for her 20-week fetal anomaly scan there was no ISL interpretation present. The sonographer apologized and offered to reschedule her scan but she would be 24 weeks pregnant by the time an appointment for another scan was available.

As Susan lived in a rural area and had traveled a distance to attend the appointment she thought it best to go ahead with the scan despite an absence of communication. During the scan, Susan could tell that the sonographer had become concerned as she began searching for a pen and paper.

The sonographer wrote – I’m sorry, I suspect a fetal anomaly and you need more tests immediately. Susan would need to see the obstetrician and partake in further tests to confirm this. Susan was distraught as she didn’t know what that meant and there was no ISL interpretation present that enabled her to ask questions.

When Susan came back to the hospital two days later for test results she was anxious for answers and used her ISL interpreter to communicate with her obstetrician. The obstetrician told her that the tests revealed that there was a possible case of Edwards syndrome, a complex and severe disability caused by trisomy 18 with a 15 percent chance of live delivery from this point.

Few of the babies born with Edwards syndrome live long beyond birth, but some may survive beyond their first year. Outcomes were impossible to predict at this point. The obstetrician said that if Susan was considering a termination of her pregnancy, this was not going to be possible in Ireland, as she was over 12 weeks pregnant.