‘She was born with blisters covering her arms, legs and belly, and it was clear straight away that her prospects were bleak. Her skin was so fragile, so brittle, that it fell apart at the slightest touch – the unmistakable symptom of a rare and incurable congenital disease. The skin became easily inflamed, giving rise to life-threatening bacterial infections. Because she had trouble feeding, another hospital had inserted a feeding tube down her throat, which proved to be a poor decision: her mucous membranes were damaged by it, and so her oesophagus was now also covered in blisters.
Bridie was only a few weeks old and was suffering horribly, we could all see it. Our treatments brought more misery than relief. Her dressings were changed every second day, a process that was so gruesomely painful, it took place under anaesthetic. We had no choice but to inform the parents that there was no cure and that their daughter would eventually die – all we could do was prolong her life and try to alleviate her pain. They were extremely distressed. They sent me photos of Bridie in the bath: most babies revel in warm water, but for her it was pure torture. What kind of life is this, they asked, if even a warm bath can offer no comfort?
One day, they delicately posed me a heart-rending question. To them, the thought of subjecting their daughter to a period of extended misery before her inevitable death was unbearable. They wanted to spare her the torment and asked if I would be willing to assist with her euthanasia. We brought the whole medical team together to discuss it. Their request was unprecedented, and we could see the looming legal obstacles: parents are not allowed to take unilateral decisions on their child’s life or death. We spoke to the local public prosecutor, who heard us out, but offered no resolution. I can’t give you an answer, he said, I can only get involved once someone has actually died. Though the parents’ wish was completely reasonable, the potential legal ramifications were simply too great. We replied that, sadly, there was nothing we could do.
They left the hospital with their baby and a truckload of bandages. Bridie died several months later at home, and it was not a pleasant death. She needed increasing amounts of morphine to combat the pain, and eventually she simply stopped breathing. When we heard of it, we were outraged. We had been unable to offer Bridie and her parents any help at all; it was an appalling display of medical practice.
Once again, we arranged to speak to the public prosecutor. In the meantime, the incumbent had been replaced and his successor was willing to listen, so he came to our ward to assess the situation. He informed us of prior instances of doctors who had ended the lives of chronically ill children and who had reported it to the justice department. There were twenty-two in total, and in every instance the department had ruled that due diligence had been observed: the doctors had done all they could, and death had been the only way to end the child’s suffering. Not a single doctor had been prosecuted, but the cases hadn’t been made public – if only we had known.
The department believed it was time to introduce some transparency. We were permitted to consult the legal reports, on the condition that we would publish our research findings in a journal. We did, and the discussion was opened up both here and abroad. Four years after Bridie’s death, we drew up a national protocol, a set of guidelines for other doctors who find themselves in the same predicament. We later extended our work to cover palliative care, to help relieve suffering in the final stages of children’s lives who have no hope of recovery.
Bridie would have turned eighteen this year. I stayed in touch with her parents for quite some time. To this day they are still proud of her and rightly so. I never could have suspected that one little girl could bring about such sweeping changes. Bridie forced us to consider the lot of children without any prospects for a fulfilling life, and that has changed everything.’