A Gift of Time

Perinatal hospice is an unexpected source of joy and peace.

Posted Dec 16, 2011

This being the holiday season, I'd like to share an unexpected source of joy...

Imagine being pregnant and eager to welcome this new baby into your family.

Imagine going to the routine 20-week ultrasound, excited to see your little one in the womb.

Imagine the sonographer solemnly and silently lingering a little too long on one spot.

Imagine sensing the shift in tone as the doctor is summoned.

Imagine being told that your baby has a fatal condition and there is nothing medical science can do to give your baby any quality of life.

Imagine.....

At this point, you may be wondering, where's the joy in this?

And like many people, you may be thinking, "Well, the only option is to terminate the pregnancy." 

But what if there was a better alternative?

What if this alternative was more compassionate and humane?

And what if this alternative gave you the gift of time to lovingly care for your baby to the natural end of his or her precious little life?

This alternative is called perinatal hospice.

Perinatal hospice is not a place, but a model of care that supports parents through the experience of continuing a pregnancy, knowing their baby's life will be brief.

But isn't it better to "get it over with"? How can parents cope with the sorrow, fear, and dread? For sure, these are common first reactions. Many parents wonder: What's it like to be with a dying baby? Will my baby suffer? Isn't it dangerous to stay pregnant with a baby who has a life-limiting condition-or a baby who may die before birth? Won't my grief be more terrible if we extend this?

Here are the reassuring answers:

When a baby has a fatal condition, the body is unable to sustain life outside the mother's body, and it slowly and gently winds down. Some babies only show signs of life for a moment; others can live for minutes, hours, days, or months, and some babies' timeframes can be hard to predict. Parents learn to live in the present and appreciate each moment as it comes.

Most congenitally life-limiting conditions are not painful, and palliative care is available to address any discomfort that might arise. When a baby dies before birth, parents have the added grief of not being able to see their baby alive. But there is no danger to the mother, and after birth, they can spend time loving and becoming acquainted with their little one. They can even take their baby home to provide after-death care themselves until burial or cremation.

Research shows that a parent's grief can be more terrible after termination. After all, termination requires that they take invasive action to end their baby's life, and parents must cope with this additional trauma. In contrast, parents who experience perinatal hospice find it a healing path to take. Protecting and nurturing their baby to the natural end of life is a far gentler approach.

As parents have their questions answered, they can also find reassurance in the gratitude expressed by the parents who've gone before them. They can rest in the knowledge that perinatal hospice allows them to give their baby the best quality of life, however brief it might be. And their hearts open to all the possibilities for making the most of the time they still have with their baby. This gift of time offers them opportunities to express their love, create lasting memories, make treasured photographs, and honor their child's place in the family.
Would parents be better off not knowing that their baby will die? In hindsight, parents think not. They are so grateful that they could proceed thoughtfully and make the plans that would enable them to look back without regret. They are able to be fully present with their infant after birth, rather than be blinded by shock and horror at the sudden news of their baby's impending death. During the pregnancy they can "take" their baby to a ball game or the beach. They can ask for more monitoring-or less, consult with a neonatologist about palliative care, and make special requests for their baby's special birth. They can create a parenting plan that lays out how they want to spend time with their baby before and after death. They can make arrangements for photography, family involvement, after-death care, rituals, and other commemorations.

In the past few years, perinatal hospice has become a movement, championed in part by Amy Kuebelbeck, who wrote the groundbreaking memoir Waiting With Gabriel

Earlier this year saw the publication of our book A Gift of Time: Continuing Your Pregnancy When Your Baby's Life Is Expected to Be Brief (Johns Hopkins University Press), which supports parents through this experience. On our website, www.perinatalhospice.org, you will find a wealth of information and resources, including research studies, nonprofit organizations- and hospital and clinic programs, which have been created by the dozens.

Note: You don't need a program for perinatal hospice to happen. Just one health care practitioner willing to coordinate care can provide immense support to a family. In the absence of a willing practitioner, parents themselves can create and implement their own care plan.

To see photographs of perinatal hospice in action after one baby's birth, here's a video created by Tammy Ruiz, RN, a dedicated pioneer in this field. As she points out, "The real goal of perinatal hospice is to provide a safe place where parents can parent, and take the first tiny steps toward healing."