Why Would Parents Choose Hospice Care for Their Newborn?

Imagine giving birth to your precious baby, whom you greet with a loving heart and open arms.

Imagine the shock and fear when your baby soon struggles to breathe without a strong heartbeat.

Imagine saying goodbye as your baby is transported to a regional center for evaluation.

Imagine finding out that your baby has a condition that cannot be cured by modern medicine.

Imagine that intensive care may prolong life, for perhaps a short time, or maybe a number of years, but it also entails lengthy hospitalizations, brutal procedures, great suffering, and constant uncertainty.

Imagine that without intensive care, your baby has only hours or days to live.

Imagine that, as your baby’s parents, this life-and-death medical decision is yours, and yours alone to make.

Imagine choosing hospice care.

This was the experience of Claudia Putnam, described in her award-winning memoir, Double Negative (Split Lip Press, 2022). In it, she explores the landscape of making “an awful choice between a worst thing and another worst thing” for her beloved baby, Jacob, and then she takes us along her journey of coming to terms with this agonizing decision.

We saw either medical path as ultimately leading to a transplant, and Jacob’s resulting life as a trenched battle that would never end, a battle we would be drafting our son into whether he liked it or not. Some people would see this as engaging in a heroic struggle for life. Instead, we saw it as forcing our son to spend his whole life fighting not to die. (p. 20)

The death of a baby is a devastating loss to bear. It’s untimely, unfair, disorienting, and a total violation of expectations. When parents also make life-or-death medical decisions, they experience even more layers of devastation as they struggle with feelings of responsibility, guilt, and second-guessing decisions made.

Of course, I questioned our decision, now irrevocable. Perhaps he did want to fight, after all. Over time, I came to feel that he fought for the life, the love, we’d given him. Had we given him a different life, he might have slipped off gently into the night. None of this slim consolation was available in the moment, watching him wage a battle that could not be won. (pp. 36-7)

In her memoir, Putnam takes us along her search for answers and meaning, and she ponders deeply. When does baby’s spirit enter the body, and when does it leave? Can we intuit a baby’s desires and tolerance when making medical decisions? She explores her own history, including what made her baby so unique, and what made her especially equipped to answer this call to parent him in precisely the way he needed to be parented. She finds peace in the realization that she profoundly, intuitively knew him and would’ve made a different choice for a different child.

Intuition: who do you feel your newborn or unborn child is? The kind of life our doctors were outlining, even with the best outcomes, even with hoped-for improvements in anti-rejection protocols, meant multiple surgeries through the breastbone. This kind of thing takes a very patient child. (p. 15)

Perhaps I might have made a different decision for a different child. Not necessarily a personality with less steam or reach, or even drive, but possibly more willingness to accept the universe as it is or as it appears to be. (p. 16)

Putnam also finds solace and sense in the writings of others who’ve pondered the intersections of life and death through many lenses, including philosophy, literature, physics, mathematics, and medical ethics. For example, she considers this quote by poet Louise Glück: “To get born, your body makes a pact with death, and from that moment, all it tries to do is cheat.”

No matter how we try to get out of dying, no matter how much the miracle workers try to prolong our lives, the fact remains that we don’t get to pick when or how we go. This inability to control our end seems to be part of the contract. We can cheat here and there, but there’s something discomfiting about that. A deal with the devil, in which our death may turn out worse than if we’d just gone quietly in the first place. Whether it’s round four of chemotherapy or outlandish surgery, we merely trade in one date we couldn’t pick for another date we won’t be able to pick. With possibly worse circumstances. (p. 23)

It is interesting to note that Putnam and her baby’s father, John, went through this experience 30 years ago. Today, parents can benefit from the cultural shift that recognizes that death isn’t the worst thing that can happen: hence the development of living wills, through which people can proclaim that they don’t want medical interventions that do more harm than good, or that merely prolong dying. As a result, there is more widespread support for choosing hospice care, even for babies, so that they can experience a comfortable life held in loving arms rather than a painful life held by machines. Medical professionals are also far better equipped to support parents in spending time with their dying babies in the ways they find meaningful. Most significantly, a new medical specialty has emerged: perinatal palliative care. When a baby’s life-limiting condition is discovered during pregnancy or shortly after birth, perinatal palliative care offers parents the comprehensive support they need to embrace their baby’s brief life. Especially when hospice decisions can be made before birth, the parents can focus on cherishing the time they have. Note, however, that Putnam’s book is timeless in the way it examines parental grief, deciding against aggressive intervention, and choosing hospice care. In fact, Claudia and John were ahead of their time, as they could see that choosing hospice care is “heroic” precisely because it takes a special courage to see when a natural death is in a baby’s best interests, and to let go with love.

Irrationally, had we gone for a transplant, we would have been called brave. Pioneers. Fighters. No question that we were doing everything that could be done. Life magazine might have featured us, instead of, as it did not long after Jake’s death, a mother who refused to pick up her baby while he awaited a transplant. She said she was afraid he would die in her arms.

We were afraid Jake would die when we weren’t holding him. To put our child through what our doctors and nurses were describing because we couldn’t face his death. To get ourselves off the hook by stringing him to wires and tubes. To let our own fear of death rule his life. That would be selfish of us, we thought. (p. 16)

In short, Claudia and John were willing to bravely face death, let go, and suffer grief for their child, rather than deciding that their child should suffer for them.

If you’ve wondered how parents could possibly choose hospice, this book will show you why. If you’ve pondered your own mortality, this book will illuminate your own values around end-of-life medical decisions. And if you’ve made life-and-death medical decisions for your own child, you’ll find comfort in knowing you’re not alone in your search for answers and meaning.