Jeffrey's Story

Jeffrey's Story was written by Karen Zerr on her journey of grieving and healing.

My husband was in the Navy going through the Aviation Training Command to be a jet pilot, and we had moved to Kingsville, Texas in October 1968. We moved about every 6 months in those days. I was about 6 weeks pregnant with our third child; our other two children were 3 and 1. We settled into our rental home, and Jack continued with flight training. My pregnancy proceeded in a normal fashion until I went into premature labor on March 16, 1969. I couldn’t believe it! This wasn’t supposed to be happening. With my nursing background, I knew if the baby was born at 28 weeks he/she would not survive. It was a Sunday morning so I couldn’t just go see my doctor, and in my mind I decided labor was not happening. However, by that evening, even my mind was convinced I was in labor and I needed to go to the hospital. I worried about what to do with our two young children as we had no family living in the vicinity to help out. I did know the neighbors very casually, but would they be willing to take the children at 9:00 at night for who knows how long? They weren’t even Navy and had no children of their own, so would they understand?  Fortunately, they were very willing to help for as long as necessary and we met our doctor at the ER. He examined me and determined that I was in active labor and there was no way to stop it. I was devastated!!!  No, no, this couldn’t be happening – but it was. I was sobbing as they put me on the elevator to take me to surgery, and the next thing I knew I was being given a spinal anesthetic to prepare me for a C-section. I was awake when Jeffrey was born, and I heard him cry. It wasn’t a lusty cry, but he was alive and crying, which gave me a glimmer of hope. I never saw him because they rushed him off to the nursery. There was no NICU back then, but a pediatrician was there waiting. They put me to sleep to close me up.

I woke up in the recovery room and then was taken to a private room on the OB floor. I wanted to know about our baby, and I wanted to see him. Unfortunately, this was not possible. He couldn’t come to me because he was fighting for his life. I couldn’t go to him because in that hospital at that time, you had to lie flat for 24 hours after having a spinal anesthetic – no exceptions.  Jeffrey only lived for 12 hours, and in that time frame, we were powerless to do anything but pray. The Catholic Navy Chaplain came to see us to get information for Jeffrey’s baptism, and he was very uncomfortable. He did not make me feel one bit better, and he never came back to see me. In his defense, he didn’t have a clue how to handle the situation.

So, there we were. We were left wondering, "How do we bury our precious baby boy?" We certainly didn’t want him buried in Kingsville. I fervently hoped that once Jack finished with flight training, I would never see Kingsville again.  What was a young Navy family to do? By then, my parents were on their way driving from St. Charles, MO to help us out, so they couldn’t make funeral arrangements. Jack called his parents and they were more than willing to help us. Jeffrey’s tiny little body was put on a train all by himself and shipped back home to his waiting grandparents for burial. 

I never saw Jeffrey. I never held him in my arms. We didn’t even think of taking pictures because that was considered bizarre back then. There was nothing in place to help us grieve and no one to guide us through this horrible, life-altering event. Basically, we were told to just get over it and move on. Well, that doesn’t happen. I still have a hole in my heart and I always will. Yes, I finally got to where I accepted our loss but I will never “get over it."

We, literally, did move on. By April 1969 we were on our way driving to Jack’s new duty station in Jacksonville, Florida, less than 4 weeks after major surgery and losing our baby boy. I had my 6 week check-up with a totally new doctor who had nothing more to offer in the way of resolving grief than anyone else had.

Fast forward to 1998. My husband had retired from the Navy after 36 years, and we moved back to St. Charles, MO where he worked for Boeing. One day, out of the clear blue, I thought about Jeffrey and wondered what he was wearing when he was buried. That thought quickly progressed to wondering, "Was he wearing anything?" Unfortunately, that question won’t be answered in this lifetime because both of my in-laws are dead. So, I decided to find out what premature babies are buried in. I called the local funeral home and was told that he was at least wrapped in a blanket.  My heart lurched! He probably didn’t have any clothes on, only a blanket. Fortunately, I was also referred to Share.  I had never heard of it, but I called, talked with Cathi Lammert and told her my story. I felt really silly after all these years, but my grief had never been resolved. I told her I might be interested in doing some sewing for Share. She told me there was definitely a need for burial clothing as you can’t go to the mall and buy teeny tiny baby clothing. So, long story short, I have found healing in sewing burial clothing and crocheting blankets for babies from teeny tiny miscarried babies up to babies of full term birth weight. I do it to honor and remember our Jeffrey, and it is a joyful thing for me to do. And I do it so no other mother has to worry if there is clothing for her precious baby to wear. Dressing a baby makes that baby so real. He/she is something to celebrate, not forget about and move on. Share has helped me all these years later as we mothers never forget our babies. Share's mission spans the years.

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 www.perinatalhospice.org, a clearinghouse of information about perinatal hospice and palliative care for parents and caregivers.