Patient-Centered Care through a Couple's Eyes: HeartPrints Eased the Grief

March-April 2012

BY: LAURA RICHTER, M.Div.

It was a humid August morning when my husband and I climbed into the car to go to Mercy Medical Center in St. Louis for one of our prenatal ultrasound appointments. We were nearing our pregnancy's midpoint and were eager to see our little baby.

You could say Paul's and my journey to parenthood began in 2007 — we met in the springtime of that year, and in a matter of days we were inseparable. During our frequent dates, we often spent time with friends. Many of them told us later they had noticed how much Paul and I enjoyed being together; they sensed this was a special relationship. Our love blossomed steadily — we were engaged on our one-year anniversary and married a year after that.

Though our relationship had much joy, we also experienced deep grief early in our time together. Not long after Paul and I began dating, my mother was diagnosed with pancreatic cancer and succumbed to the disease four months later. Shortly after our marriage, Paul's dad died suddenly of diabetes-related complications. Struggling with such major losses early in their relationship might have strained some couples, but we found ourselves stronger for the experiences. In addition to the typical adjustments a couple makes as they build a life — how to manage funds, how to live together — we also learned about how each other grieved. We sensed ourselves maturing through our losses, and we were steadfast companions during both the joyful and the difficult times.

In the winter of 2009, Paul and I began talking about starting our family. We were pregnant the following spring and excited at the prospect of parenthood. Our first trimester screening showed a healthy baby, and we began planning for this new life that would join us near the end of 2010.

Our uneventful pregnancy turned rocky early in the second trimester as I began to experience complications. Though I was feeling pain, the baby was unharmed, and several health professionals assured me the baby and I could make it through this episode and there was little cause for concern.

Despite a positive ultrasound and optimistic doctor visit in week 16, we became anxious again in week 17 when some test results suggested possible spinal anomalies. The obstetrician assured us the chances were slim and that the 10 percent chance something was wrong was balanced by a 90 percent chance everything was fine. We had an ultrasound scheduled in another week and anticipated receiving more information then. And so we loaded ourselves into the car on that humid August morning hoping for encouraging news.

No such news came. The ultrasound tech did some initial scanning and took some measurements, but then excused herself, saying she would fetch the doctor who would explain everything. Those were probably the longest moments of our lives — waiting for the doctor to share some news of our baby. He finally entered, did a little scanning himself, then asked when we had last seen the baby's heartbeat.

"Just 10 days ago," I said, telling him of the positive 16-week visit.

Silence.

That was too much for me, so I asked, "Our baby is gone, isn't it?"

The doctor looked at us and said, "I am sorry, but your baby is gone."

I lay on the ultrasound table and sobbed while my husband held my hand as tears rolled down his face. The doctor told us we could cry as much as needed, because he had just delivered the worst news expectant parents could hear.

The next few minutes are a blur. There was talk of what needed to happen and our choices for procedures. The doctor sent us home to rest, and we waited for my obstetrician to call. When she did, we made a plan that included delivering our baby that night. Between bouts of tears, we called family, close friends and workplaces, letting them know what had happened and what lay ahead. I had to call a friend for advice on what to pack for the hospital, as I hadn't taken child-birthing classes yet.

Finally around 7 p.m., it was time to leave for what would be the hardest and most blessed part of our journey.

In the hospital's Labor and Delivery Department, I approached the admission desk, clutching my pillow. I had Paul's arm behind me for support, but I couldn't get a sentence out. The admitting clerk knew what to do and quickly whisked us to our room. Before leaving, she gave me a hug and told me everything was going to be OK — she had been through something similar, she said, and promised the staff would take excellent care of us.

Our nurse came in shortly after that, introduced herself and told us she was sorry for our loss. She took vitals, filled out necessary paperwork and let us know that the resident physician would be with us as soon as she could. The nurse also promised to find Paul a bed, because it was clear he was too tall for the reclining chair in the room.

I was induced around 10 p.m., and the nurse explained what the delivery process might be like and what we could expect in terms of how the baby might look. She also left us a packet of materials on fetal loss. She recommended we try to get some rest, since we did not know how long labor would last. We slept for a couple hours, but once contractions started, I was no longer interested in sleep.

Sometime around 3:15 a.m., the on-call obstetrician stopped by to see us. She stood next to my bed, holding my hand and stroking my hair, telling me how sorry she was for our loss. She then sat with Paul, who had many questions about how this could have happened when I had such an easy pregnancy. In the face of the unanswerable, everyone was so compassionate. The team was close by when our baby arrived at 3:50 a.m. The resident and nurse worked to separate the baby from me and quickly cleaned its tiny form, wrapping it carefully in a receiving blanket.

As the nurse was swaddling the baby, it occurred to me that we still didn't know if our baby was a boy or girl. A peek under the blanket revealed we had a son, and they brought him to us. He was so small — around six inches long — and we held him as, through our tears, we began discussing boys' names.

We were totally unprepared for the task — after all, we thought we had time — but eventually we chose William Joseph for the baby who will always be our first son. We were allowed to keep William in the room with us as long as we wished, and we are appreciative for the time we had with him.

THE MERCY HEARTPRINTS PROGRAM
I am not only a former Mercy co-worker; I also know the care and concern Mercy staff showed my family and my mother during her illness. All Mercy co-workers are trained to provide excellent service, call people by name and care for the whole person.

I never doubted Paul and I would experience the same "Mercy Service" when it was time for the birth of our baby. I also knew we would receive excellent spiritual care — as indeed we did when we lost William.

Sr. Teresa Horn-Bostel, CSJ, a chaplain in the Pastoral Care department, led us in a memorial service that deeply touched our hearts: "God, we do not understand why you would give life only to take it again. We do not understand why You would let us anticipate a birth only to be pained by death. We ask You to help us trust in your goodness and wisdom when our understanding falls short."

We so appreciated the many amenities Mercy offers — from being able to order breakfast for Paul so he didn't have to leave me to go to the cafeteria, to having Web access that made updates to friends and family easy. We were grateful for our overall experience, but it was the personalized care, especially as offered through Mercy's HeartPrints program, that left the most memorable imprint on our lives.

Mercy HeartPrints is based on the Resolve Through Sharing bereavement services program developed by Gundersen Lutheran Medical Foundation, La Crosse, Wis. It has been in place at Mercy St. Louis for 24 years, and we came to know it intimately during our stay and in the months that followed. Maggie Loyet, RN, coordinator of HeartPrints since 1989, and everyone connected with the program receive special Gundersen training as counselors, and they in turn train Mercy staff about fetal loss and how to care for grieving parents.

For example, at change of shift, each new nurse would enter our room, introduce herself and let us know she was sorry for our loss. In fact, each staff person who entered our room offered sympathy — everyone seemed to know that we were grieving.

I later found out there was a "HeartPrints" sign posted on our hospital room door, alerting staff to what had happened to us. When it was time to move us to the post-partum floor, the sign traveled with us, and staffers were careful to find us a room in an area away from the nursery and nursing mothers. This courtesy not only applied to us, but also to two other couples in rooms nearby. Their doors carried HeartPrints cards too.

The post-partum floor was quiet, and it gave me a chance to read the folder of materials. I began to wish I had read them the night before. The folder had helpful information, poems and resources as well as tips for what to do in these first days following our loss. By that time, I realized we had missed the chance to do some of the things mentioned in the booklet, like take pictures of William so we could remember him. Yet Maggie Lyot had anticipated much of what we would need.

Maggie didn't visit until the evening after we delivered William, but she stayed as long as we needed her. She asked about our experience and listened to our story. She walked us through the materials in the folder and gave us tips from other couples who had experienced loss.

She also came with remembrances related to William. In a small fabric pouch was a felt heart, a baby gown William had worn, two little bracelets (both his hospital bracelet and a blue-and-white beaded bracelet that said Baby), a measuring tape showing his length, and a CD with several pictures. In an accompanying folder were a birth certificate, William's footprints and the card that would have been on his bassinet with all his birth information. Maggie shared options for burial — we could either bury him privately, or William could be buried with other HeartPrints babies who were delivered in August. We didn't have to choose right away, and she gave us time to make our decision.

Our experience with HeartPrints did not end when we left the hospital. Paul and I attended the HeartPrints support group Maggie runs monthly at Mercy. Maggie creates a safe space to share with couples who have had similar experiences. It was helpful to process our feelings with others who understood our situation and could offer support. Maggie also serves as a link to Share Pregnancy and Infant Loss Support Inc., a national not-for-profit group based in St. Charles, Mo., that provides resources for grieving parents and training for caregivers. We appreciate Share's annual memorial services and walks of remembrance, as well as Share's Angel of Hope Garden at Blanchette Park in St. Charles, where William has a memorial brick. Maggie, who works collaboratively with Share, is always in attendance at these events and welcomes us warmly by name.

HeartPrints provides ongoing support via mail and follow-up calls. Throughout our first year of grieving, we received cards and little trinkets — at Christmas, on Valentine's Day and on Mother's Day and Father's Day — letting us know we were being thought of in a special way. Maggie called regularly after we left the hospital to check in and see how we were doing. She informed us when William was buried so we could see the marker at the cemetery and know exactly where he was buried on the Mercy plot. On the one-year anniversary of our loss, there was a message from Maggie to tell us she was thinking of us and William Joseph, and she was available if we needed anything.

I have heard many stories from couples, both young and old, of similar losses in their lives. In earlier days, late miscarriages or stillbirths would have been whisked away before parents could even see their child — the thinking was, perhaps, it would spare them pain. Even now, many hospitals struggle to put services in place for those facing such grief, leaving it to departments that handle social work or spiritual care or to individual nurses.

Few facilities are lucky enough to have a dedicated program and trained staff to support bereaved parents. Yet these losses happen regularly, and they are devastating to those who experience them. That August night at Mercy there were three couples who lost an unborn child, and we are among the countless others who have suffered the same sorrow.

HOLY GROUND
Maggie Loyet embodies the best of what Catholic health care has to offer, and the HeartPrints program is a gem. Not many people emerge from an experience like ours calling it blessed, but both Paul and I do — we are grateful for the care we experienced at Mercy as we delivered our son William and for our connection with the HeartPrints program. Both Maggie and the Mercy nurses accompany those who are suffering, attending to their individual needs, revealing God's love during a dark and uncertain time.

In her book, Food for the Journey: Theological Foundations of the Catholic Healthcare Ministry, (Catholic Health Association of the United States, 1990) , Sr. Juliana Casey, IHM, states health care is holy ground and a powerful place for revelation. She writes:

The dynamic of giving and receiving care when one is ill, troubled or suffering is a significant part of the human experience. It is, therefore, grace-filled, a holy ground. Healthcare is about people, people who are vulnerable and anxious, and people who seek to alleviate suffering, to heal and to accompany others in their struggles. As one Chief Executive Officer said, "We touch people at the most vulnerable points in their lives— when they are being born, when they are sick, when they are dying." The world of healthcare is unique and intense. Thus the potential for revelation is also unique and intense.

 

Paul and I walked away from William's delivery calling it graced despite the fact it was the most difficult and intense experience of our lives. For us, Maggie and the staff at Mercy not only offered us the best of Mercy Service, but they demonstrated the heart of Catholic health care. Like Moses, the staff and Maggie took off their shoes as they encountered us during our hospital stay. Also, like Jesus in the story of Emmaus, Maggie walked with us on our journey, asking to share the story of what had happened to us in the past days. She not only traveled the immediate road with us, but she continued a bit further as we continued to move through our grief once we returned home.

Maggie called regularly in the first few weeks after we delivered William. I was glad for her support and especially appreciated the mementoes she gave us, as these things are all we have of our son. It took me awhile before I could look at his pictures, and though they were hard to see initially, I am glad we have them. Months later, I was able to display our mementoes of William in a shadow box that hangs in our hallway alongside other pictures of family and friends.

Maggie not only worked with us individually, but also helped to connect us with communities that could help us process our experience. Speaking of community, I also have the benefit of working for a Catholic health care organization with a mission-based culture. We received countless signs of support from Ascension Health. Numerous cards, flowers, Mass cards, messages and gifts came in the days and weeks that followed and again, we were comforted during a dark time and knew we were not alone. In many ways, we felt, in a very tangible way, what Catholic health care is all about, both as patient and colleague. Our experiences, at Mercy and beyond have been so meaningful and have served as ground where we have come to know God and make sense of William's short life.

William is buried at Calvary Cemetery, St. Louis, and Paul and I are comforted that he was buried with other babies like him. We like to go there to sit by the lake, near the marker which reads "in loving memory of all babies born to God at St. John's Mercy."

As I pen this article, Paul and I are waiting for our second child, who is due early in 2012. There is no naïvetè in this pregnancy — we know difficult things can happen and that there are no guarantees. We hope for a different outcome, but trust that whatever experience we have, it, too, will be sacred. We will experience the best that Catholic health care has to offer through the birth of this child or through the support of the HeartPrints program.

We move forward in faith. To know that someone will walk with us and that God will be present no matter what happens is great comfort and helps us face the future with hope.

LAURA RICHTER is the director of workplace spirituality and the director of mission for Ascension Health in St. Louis.

 

Copyright © 2012 by the Catholic Health Association of the United States
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