Healing Garden, Heartbreaking Dilemma: Seeing The Prouty Debate From Both Sides

Prouty Garden was the private world of a father and daughter until we arrived. They had Prouty to themselves, before we invaded through the glass doors of a medical library.

The Ethics Advisory Committee of Boston Children’s Hospital, on which I am a community representative, broke up a little early from our monthly consideration of harms and benefits and the care of families. We left our windowless room and filed outside for a photograph. Fresh air was welcome; EAC meetings are intense.

It was the final meeting for some longtime members, the first for new leadership. Where better to take a group photograph than the verdant and healing space of Prouty Garden?

A few minutes were required to get the pose right and everybody in the picture. There were maybe 40 of us lining up in rows on stone steps.

By now, I suppose, you expect me to announce I’ll be standing in front of the bulldozers ... I can’t do that. I have mixed feelings...

While the photographer positioned us, I watched the father and daughter. I didn’t know them. They could have been from the Far East or the South End. The father lifted his daughter from her wheelchair, and now held her in his lap on a jacket serving as a blanket on the grass.

I would guess she was 4, small for her age, and at the mercy of her father for movement. He was feeding her, a little at a time, while gently stroking her head and uttering words I could not hear.

They seemed not to notice the group nearby smiling for posterity and marking a moment in time at an institution devoted to family-centered care, the meaning of which is not always clear to me.

I don’t believe I ever took my daughter to Prouty; she had no immune system when Boston Children’s was our residence, and being in such a public space would have been unsafe. Indeed, I was conflicted any time I visited Prouty, because it meant leaving my daughter up on the seventh floor. But it was important to get away to such a space, even for a few minutes: by myself, with my wife, with a friend, with a novel.

Prouty is sacred space, blessed by tears and abiding love. Ashes of children have been sprinkled there. Final moments have passed there. Nurses have recovered there, then gone back to work.

By now, I suppose, you expect me to announce I’ll be standing in front of the bulldozers and chainsaws soon to arrive to begin the process of building over Prouty and creating new space to treat suffering and sick children.

I can’t do that. I have mixed feelings — not about Prouty Garden, but about all the other sacred spaces at Children’s Hospital, and how there are never enough of them.

One is Seven West, which doesn’t exist anymore, at least not as the Hematology-Oncology Ward that became our home. We moved in and out over a period of months. We arrived once expecting a room on Heme-Onc, where the doctors and nurses knew us and how best to treat my my daughter. But it was a bad day — too many kids with new or recurrent cancers. There wasn’t a bed for us.

Instead my daughter was checked into a general medical ward. She got her own room, which wouldn’t have happened on Heme-Onc. But she couldn’t leave it, because there were infectious diseases of different varieties behind the doors of adjacent rooms.

We marinated in Purell that long night, and when a room became available on Heme-Onc, I didn’t ask why. I knew better than to request a private room. The only dedicated single on Heme-Onc was for the imminently dying.

On Heme-Onc, everybody knows the rules: If you’re infectious, keep away. Asleep next to my daughter on a foldout, I startled awake one night to sniffles and nose blowing. I jumped up, pulled the curtain back and revealed nothing more troubling than a sister’s sadness for our roommate. I closed the curtain.

We could have used privacy that night. Also when a roommate wailed from the cancer or chemo and the only comfort her father could offer was a CD of insipid music. It comforted neither my daughter nor me.

I understand that when they build over Prouty Garden, there will be more single rooms. For a child with no immunity, this will matter. As much as, arguably more than, a garden.

Or that night we heard a roommate cry “Ow!” a half-dozen times before a vein was successfully accessed. Not a confidence builder, that.

I understand that when they build over Prouty Garden, there will be more single rooms. For a child with no immunity, this will matter. As much as, arguably more than, a garden.

Would my feelings about Prouty be different if they were attached not to the rescue but to the loss of a child? Without question.

The beauty of Children’s Hospital is that I can only imagine what that’s like. The beauty of Children’s is that many go home.

The Children’s slogan — "Until every child is well" — is absurd, of course. But the beauty of Children’s is that it’s a hopeful and aspirational place where you can believe such a thing. That is why there will never be enough private rooms or sacred spaces.