After eight weeks, Miracle came off the ventilator we had put her on. But three days later we had to turn it back on, and it was possible she would die or remain on the ventilator permanently if we didn’t give her steroids, which can have side effects as serious as cerebral palsy. Her mother opted for the steroids. But Miracle’s father was angry. He muttered to me: “Why do you do this? Why do you keep these babies alive?”

I’ve been thinking about that question for decades and haven’t found a simple answer. Some parents believe that withholding or withdrawing life-sustaining treatment will prevent their infant from suffering and living a life not worth living; others consider it murder. Some families soar in caring for their disabled kids; others disintegrate.

Ultimately, parents have the right to decide, but we physicians must help them make informed decisions. I asked Miracle’s father whether anyone had talked to him about resuscitating Miracle before she was born. He vaguely remembered a conversation, but hadn’t understood what treating such a tiny premature baby meant.

And nobody talked to him after Miracle was born about continuing life-sustaining treatment. In fact, he had gotten to her two-month birthday without realizing that her suffering might end in death. We had updated his wife, but she didn’t like to hear bad news, and didn’t tell him.

Luckily, the news has improved. Miracle is off the ventilator and will likely survive to be discharged, though she will suffer from chronic lung disease.

Even so, we need to make sure both parents are always kept part of the discussion, to ensure we have their informed consent throughout treatment. It can’t be just one conversation.