The Children Who Never Leave the ICU (Part 1): A Tracheostomy Decision, and the Choice No One Mentions

The Children Who Can’t Leave the ICU (Part 1)

The ICU — Intensive Care Unit — is a ward hospitals set up specifically for critically ill patients, staffed around the clock in rotating shifts.

A medical center in northern Taiwan has a pediatric ICU (PICU). When a child is admitted, the nurses have the family sign a “critical condition notice” — meaning that once your child is inside, survival comes down to whatever medicine can do, and the rest is left to fate. To limit outside interference and infection risk, family visits are capped at three times a day, thirty minutes each.

Over two years, I signed more than a dozen of those notices. Most of the time it was a respiratory infection turning into pneumonia — bacteria and viruses hiding out in the lungs, improving on antibiotics but never fully cleared, then flaring up again just weeks after we got home.

A few children from those years in and out of the PICU have stayed with me. The first was a boy about eleven months old in the bed next to my son’s. For nearly three months of visits, he lay there intubated, eyes never opening, completely still. His parents were warm and upbeat — they always showed up smiling, and my son adored his father especially, who could always get a laugh out of him. Once we got to know each other, I learned that this boy had choked while drinking milk, gone into shock, and been deprived of oxygen for over six minutes before reaching the hospital. The brain injury was why his eyes never opened — he was, in effect, in a persistent vegetative state.

Once a patient has been intubated for more than eight weeks, doctors will typically recommend the family consider a tracheostomy.

Should a Brain-Dead Infant Get a Tracheostomy?

One day, that boy’s mother asked me whether she should let them do the tracheostomy. My own son had been trached for a few months by then, and the road since is something I can barely bring myself to revisit: caring for him around the clock, suctioning, repositioning, back-patting, feeding through a nasogastric (NG) tube. If your child is going to stay like this — like someone in a persistent vegetative state — how long could you keep it up? In the end, all I could manage was a few short sentences: think it over carefully, because after the trach, it’s a lifetime commitment.

One day, his parents called his name, and tears actually ran down his face. Doctors say hearing is usually the last sense to go, so — was he actually conscious in there, able to hear his parents’ voices? Another day, I walked past his mother while she was on the phone with a doctor, and I heard her say the words “palliative care unit.” I didn’t dare ask what that meant.

Not long after, we were discharged first. The next time we were back in the PICU, I couldn’t help asking about him. The nurse told me he had become a little angel.

There Is a Choice Beyond Tracheostomy

It turns out that when brain injury progresses to brain death, tracheostomy isn’t the only option — there’s also palliative care. That means foregoing CPR, intubation, defibrillation, and other measures that would only prolong or intensify a dying patient’s suffering. For patients who are brain-dead or in the final stage of terminal cancer, it means choosing to leave this world with more dignity, and less torment.

Maybe, in the end, that was a release for that boy and his parents. Brain-dead patients who do get the tracheostomy are often sent on to what are called respiratory care facilities. If you’ve ever seen the quality of care inside one — one nurse to fifteen patients — you understand that a ventilator can become its own kind of shackle, trapping a soul inside a body that’s no longer able to let go.