Monday, January 16, 2012

Crazy Like a (Perfectly Normal) Bereaved Parent: In Defense of Rick and Karen Santorum

Perinatal death is in the news again, as people react to the story about Rick and Karen Santorum keeping their dead newborn son with them until he was buried.  Once again, there are two opposing camps. On one side are the bereaved families and medical professionals who understand and embrace this behavior; on the other side are those who are uninformed and as a result, question the Santorums' judgment. This month, my friend, co-author, and frequent conference speaker Amy Kuebelbeck is my guest blogger, shedding light on this foreign terrain and skillfully adding to my efforts to build bridges of understanding and sensitivity.
By Amy Kuebelbeck
Republican presidential candidate Rick Santorum and his wife, Karen, have been vilified in recent days for how they handled the death of their premature baby in 1996. Much of the criticism has been uninformed, some of it heartlessly cruel.

According to this 1997 story in the Philadelphia Inquirer, Karen Santorum underwent fetal surgery to try to correct a birth defect in their developing baby. She developed a life-threatening post-surgical infection, which triggered premature labor. Their son, Gabriel, was born too prematurely to survive. He lived for two hours and died in their arms in the middle of the night.

The couple kept Gabriel in their hospital room for the rest of the night and brought his body home the next morning, keeping vigil with their older children until holding a private funeral at home and burial later that day.

Some TV pundits recently opined that spending this time with Gabriel's body was "crazy" and "weird." Online commenters piled on, typing snarky comments that were much worse.
They are wrong.

Granted, many Americans are ignorant or squeamish about birth and death. But here are two key facts:
Spending time with a baby's body after death is normal and healthy, and giving families the opportunity and support to do so if they wish is now the evidence-based medical standard of care. See this position statement from an international collaboration of parent advocacy groups, this information from the Mayo Clinic, or these recommendations from the American Pregnancy Association.
Involving siblings also is considered normal and healthy, even for babies born very prematurely, like the Santorums' baby. A human being at 20 weeks' gestation looks remarkably well-developed, just small. Any child born alive is legally considered a baby, not a fetus; all states require the reporting of a live birth at any gestational age. And most expectant parents view their child as a baby, not a clinical "fetus," whether born alive or not.

Some resistance to the idea of spending time with a baby's body is rooted in outdated thinking about miscarriage, stillbirth, and infant death. As childbirth became medicalized beginning in the early 20th century, the subject became taboo. In a misguided attempt to protect parents from grief, doctors and nurses typically refused to allow parents to see a baby who was stillborn or dying, and parents were advised to forget about the baby and have another one. The bodies often were buried by the hospital in common graves or disposed of as medical waste. Mothers and fathers were deprived of their only chance to parent their child. Perhaps caregivers meant well, but for many parents this approach caused long-lasting grief and emotional trauma.

Fortunately, beginning in the 1970s, most U.S. hospitals have now adopted more enlightened practices. In part because of the loving work of parent advocates whose profound loss was minimized or ignored in the past, many newly bereaved parents are now encouraged to hold their child's body and to view that tender act as healthy and natural. They are invited to create memories with their child: to bathe their baby, give their baby a name, and take photographs. (See the work of photographer Todd Hochberg and Now I Lay Me Down to Sleep.) Nurses help parents collect priceless keepsakes such as footprints. The baby's body is treated with respect, and caregivers acknowledge the parents' emotional need to affirm their baby's existence. Organizations such as Share Pregnancy & Infant Loss Support, the Pregnancy Loss and Infant Death Alliance, RTS Bereavement Services of Gundersen Lutheran Medical Foundation, Sands UK, and the MISS Foundation continue to do pioneering work in advocating for parents and providing training for caregivers.

Spending time with the baby's body at home is less common, at least in the United States. The Santorums were ahead of their time in doing so, thanks to Karen Santorum's professional experience as a neonatal intensive care nurse, whose job included caring for families experiencing death. In some other cultures, keeping watch over a loved one's body at home is the norm, and it's leaving the body alone at a morgue or funeral home that would be considered "crazy" or "weird." But home funerals and wakes are quietly returning in the U.S., as described in a recent story on National Public Radio. Although legal requirements vary, it is legal in all U.S. states to provide at least some aspect of loved ones' care after death, according to home funeral advocacy groups.

The logistics are relatively simple for a baby. Our book, A Gift of Time: Continuing Your Pregnancy When Your Baby's Life Is Expected to Be Brief (Johns Hopkins University Press, 2011), includes poignant stories from several families who brought their babies home, either for a few hours en route from hospital to funeral home or for the entire vigil until the funeral and burial or cremation.

For parents, who have already nurtured their child from conception through birth and death, reclaiming centuries-old traditions of caring for the dead in the intimacy of home can be another meaningful way of caring for their baby. Research has found that bringing the baby's body home for viewing helped parents with their grief.

Those who can't imagine doing any of this because they haven't experienced this heartbreak should count themselves fortunate. Those who have experienced it can imagine it all too well. For those yet to come, because others had the courage and compassion to fight outdated thinking and practices, their profound loss will be just a little easier to bear.

:: Amy Kuebelbeck is co-author along with Deborah L. Davis, Ph.D., of A Gift of Time: Continuing Your Pregnancy When Your Baby's Life Is Expected to Be Brief. She also is author of Waiting with Gabriel: A Story of Cherishing a Baby's Brief Life and is editor of, a clearinghouse of information about perinatal hospice and palliative care for parents and caregivers.


Anonymous said...

Rick Santorum is a perfect example of how, just because I have this horrible thing in common with someone, it doesn't mean I have to like them. I agree wholeheartedly with the desicion to take his son home, show him as much love as possible. But I in no way respect him as a person due to his homophobia and similar views. I'm almost disgusted to have even one thing in common with him, no matter how terrible!

Anonymous said...

Our full term son died after spending his only 11 days of life in the Intensive Care Nursery. I wanted so badly to bring him outside or home so his entire life would not be spent in a hospital. It was so difficult to come home to his nursery, which was completely ready for him, knowing he would never spend any time there. I later read of families who had the viewing in their homes with the baby in a bassinet or crib, and wished I knew of this at the time of our son's death. For an infant in particular, this seems so much warmer and more natural than a funeral home and a casket. This is how viewings/wakes used to be--in homes. I don't feel the Santorums' choice was strange or "weird" at all. My heart goes out to them for any heartache the judgements made about them have caused. We were fortunate to have 11 days to hold our son and to say goodbye. Parents whose babies are stillborn or die shortly after birth need time to say both hello and goodbye-- all the time they feel they need. Spending time with the baby after his/her death is sometimes the only choice they have and should be respected with deep compassion.

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