Caring Decisions

Sarah’s story

  • Sarah had a rare brain disorder. Her mother Ella had been told that she probably would not live past the age of 2, that she would have bad seizures and chest infections and that she would be severely disabled.

    "For us, because she was our child, same as the other three and because she was…still having quite a good quality of life, we just wanted [treatment to continue]"

    "She was severely disabled but she was perfectly happy. She was enjoying things. She was making lots of sounds"

    When Sarah was admitted to hospital Ella found discussions about life support "confronting" and told her specialist that they were "not ready to have that conversation yet".

    But Sarah's condition worsened, with seizures coming more frequently.

    "And then really she started getting them every week and uncontrollable seizures. Ravaging her body really. And her paediatrician was basically saying look its getting to the point where you need to think how much longer you want this to go on for…"

    Ella and her husband found this difficult to accept. Looking back at that time

    "when we look at photos now, we almost can't look at them because she really looked so unhappy and uncomfortable"

    Finally they decided not to use antibiotics when Sarah had another infection

    "one day she had another pneumonia and I got the antibiotics out of the fridge and my husband said we've got to let her go. And I went ok and I put the antibiotics back in the fridge. So I think I almost needed him to make the decision and for me to go ok"

    Sarah died in her mother's arms at home, with her father and her siblings also present, and a nurse there to support the family.