The small, lilac colored hexagonal box, with Winnie the Pooh on the lid, brings to mind healthy babies and happy times. But not all babies are born healthy and not all deliveries are happy occasions. This box, and it’s matching clothe folder, contains mementos of a child that the parents could only spend hours, not years, with. It will be the only mementos the parents will ever have.
Putting together these “memory boxes” of children that have been miscarried, stillborn, or died shortly after birth is done by the staff of the Birthplace. For one nurse in that unit, it is a very personal project. Lesley Gorney’s daughter, Cailin, was stillborn in the Birthplace on February 11, 2003. Five months later, she had a miscarriage. If anyone can understand what these parents are going through, it’s Lesley.
“I left the hospital with nothing but my Cailins ‘going home’ outfit she wore for a short time and some mementos, including many pictures. I sat home on ‘maternity leave’ for months, contemplating my empty and meaningless life,” Gurney says. It was the staff of the Birthplace, a unit she had worked on since 1997, that came to her rescue.
“The outpouring of love and support me and my family received from my co-workers leaves me speechless every time I think about it. Words cannot describe what that has meant to me. They said, ‘tell me what you need’ - and I knew the meaning of the word friend; they said ‘tell us how we can help’ - and I knew the meaning of the word nurse,” Gorney recalls.
“Right out of nursing school I knew all I wanted to do was work with babies, so I started my career as a labor and delivery nurse. When I started working at the Birthplace, I felt I had found my niche,” Gorney says. “After having the experience of having my baby stillborn in this same place where I had so many good memories, I doubted that I could ever walk through the doors of AMC to the job I loved again. I had been robbed of the two most important things in my life - my child and my job.”
Both the emotional and financial support provided by her co-workers made it possible for Gorney to return to her job on the unit. And when she did, she had a new mission. “When I went back to work it became very important for me to take care of the families who lost their babies, and to make sure they got everything they need emotionally; things they can’t comprehend at the moment,” says Gorney.
Birthplace nurse manager Mary Miller, RN, who has been at AMC for 23 years, has seen the program grow and improve over the years. As various staff have taken a special interest in helping parents deal with loss, “Each person adds another beautiful piece to what we offer,” Miller says. For Gorney, the addition of the memory boxes and the decorated papers for recording hand and footprints were her special contribution.
The memory boxes themselves hold a number of small items, each of which has a special significance. One item is a small pink and blue lapel pin that can be worn by the parents to signal that they are members of a group that not parent hopes to join - those whose infants have died. There is also a small artificial flower. The flower would have been placed next to the baby when the nurse and perhaps the parents had taken photos of the baby. In later years, that flower will not only be something that was in their child’s photo - it will be a measure of how big the child was during those few precious hours that the parents had to be with him. And, there is a candle - to be lit on “Worldwide Candle Lighting” day. On that day, for a full 24 hours, candles will be lit around the world by parents in remembrance of deceased children.
Stillbirth and miscarriage are much more common than most people think. About 15 % of recognized pregnancies end in miscarriage which is defined as a fetal death prior to 20 weeks of pregnancy. When fetal death occurs after 20 weeks, it is referred to as a stillbirth. Stillbirth occurs in about one in 200 pregnancies. At Albany Medical Center, because it is the hospital that handles most of the high-risk pregnancies in the region, about 200 children are stillborn, miscarried or die shortly after birth here each year.
The sad journey for most of these mothers and families has started only hours or at the most a day or two before they arrive at the Birthplace. Early in the pregnancy, the mother may have suspected that something was wrong if the baby suddenly stopped moving around or kicking. At that point she would have gone to her OB/GYN for several tests including an ultrasound. That test would confirm a mother’s worst fear. Others may have checked into the hospital for a C-section to discover that the fetal monitor can no longer detect a heartbeat. Still others will give birth to babies who will live only a few hours because of birth defects or other anomalies. However it happens, it comes as a complete shock for the mothers. This was not anything they had planned for.
“When parents hear the heartbreaking news that their baby has died their grief can be overwhelming,” says Miller. “In a few brief moments, they go from happy anticipation of their baby’s birth to the intense pain of confronting his death. For many of these parents, their loss is completely unexpected, because up to half of all stillbirths occur in pregnancies that had seemed problem-free.”
When the mothers are admitted to the Birthplace, they are assigned a nurse who will stay with them through the entire process. If the staff knows that the baby will be stillborn or only live a short time, a special gold star is placed on the patient list board - so that the entire staff will know that this mother and her family need special care. Once admitted, the nurse begins to discuss with the patient things that any new mother should never have to think about. Things like autopsies, funeral arrangements, and the milk that will be coming from her breasts ever though there will be no baby to suckle there.
But the staff also talks with the mothers about creating the memories of their babies. Together they might pick out the outfit that the baby will be dressed in after delivery. They will broach the idea of taking photos of the baby and holding the baby and creating other memories. Lisa Vogel, RN, has worked on the unit for 6 years. “Each woman is different and how she reacts is different,” she says. “But I encourage them to hold the baby and take the photos. I tell them that after today, if you don’t take the pictures and hold the baby you can’t change your mind. There is no tomorrow.”
Even if the baby has died, labor will take the same amount of time as a normal delivery and could last for hours. During this time family members are allowed in the room. Like a normal birth, immediately after delivery, the staff takes the baby, washes him or her and places the baby in a special gown and blanket that has been made by volunteers. The nurses also take a photo of the baby, and record the baby’s footprints, handprints, and ear prints on beautiful pieces of matching paper. Sometimes a mold of the baby’s foot or hand is also taken. All of these mementoes are placed in the memory box or in the matching folder. All through this process, “I keep talking to the baby and the family using the baby’s name,” says Vogel. “It helps them understand that the child is real.”
Although many of the things the nurse does resembles what happens at a normal birth, there are some very stark differences. One thing is to place warming packets into the baby’s blanket. “That way the baby feels warm when the parents hold him or her, ” says Vogel. “Most of the babies are fully developed,” says Miller. “So they just look like they are sleeping.” But Miller also notes the most pronounced difference from live births.” The big difference is the silence,” says Miller. “In live births there is a lot of joy and noise as everyone is excited to great the new baby. In these cases, that baby is never going to cry. That baby has no movement - no tone. It is limp, like a rag doll.”
After the staff has finished their work, the parents are then asked if they want to hold the baby. Most say yes. They are also given a disposable camera so they can take the pictures that they want and get them developed when they think the time is appropriate. These are photos that will have to last a lifetime.
Traci Lamb is one of those mothers’s whose child lived only a short time on the unit. “I was so grateful to the staff for the way they treated me and my baby. I begged the nurses to make two copies of everything so that both sides of our family could have these special remembrances of our son, Charles.” To express her thanks to the staff, Traci and her mother have started making necklaces for other mothers in the same situation with matching bracelets they can put on their baby. “I do this because of how great the staff was to me and how significant is was for me to have these mementoes of my baby. It is also a way for me to continue to celebrate my son,” Lamb says.
Other parents and grandparents who lost babies at birth also participate in helping to create keepsakes for these bereaved parents. A group called “Bridging People and Places” works on providing the tiny outfits and baby blankets as well as stuffed bears. The head of the group is Hollie Vanderzee, a grandmother of twins that were stillborn. “Even the smallest newborn clothing is not appropriately sized for a premature baby,” Vanderzee says. “The patterns we developed for bereavement items are appropriate for babies from one pound to full term. The work we do is healing for both the giver and the receiver.”
For some parents, the grief of the day makes it impossible for them to take part in this final ritual. In this case, the nursing staff assembles all the mementoes and places them in the memory box with the baby’s name and stores it in a special place on the unit. The nurses have learned to hold on to these special boxes. “Mothers will come back months or years later looking for these remembrances,” says Miller. “I recently had a woman come back who delivered her child 10 years ago,” Miller says. “I have also learned to take the photo of the baby right away. I can’t tell you how many times I have had to go to the morgue because a mother has changed her mind and wants the photo after all even though she had initially declined.”
Preserving the memory of these little ones is vital, but emotionally challenging for the staff. When asked how they are able to cope with the emotion of dealing with this type of loss, nurse Jean Rowe RN says, “We support each other. If one of our patients experiences a loss, that is usually our only patient for the day so we can give them the time that they need. Other staff members work with the mothers who have delivered healthy babies. We are all experienced in bereavement, so we know how to support not only the patients, but one another.” According to nurse Vogel, “I can do this because these mothers turn out to be the most grateful patients we have. I cannot tell you how many times I have received letters and thank you notes from former patients saying ‘thank you for treating my baby like a real person.’ I know that if I were in that situation, I would want someone to do that for me.”
The staff is proud of their work. According to Gorney, “This is one small step in our plan to give our patients the best possible care in the worst possible situation. We also know that through our actions we are showing that every baby is important to this world and is loved by this world - not matter how small, no matter how short his or her life.”
Jackie McGinnis is a public relations specialist at Albany Medical Center in Albany, New York. Her career has also included work in politics, state and federal government, and not-for-profit organizations. She holds a master’s degree in public administration and a bachelor of arts degree in international relations.
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