Recent discussion and news coverage about the way presidential candidate Rick Santorum and his family memorialized the short life of their newborn baby several years ago has brought attention to the issue of newborn bereavement and shown that the importance honoring the lives of newborns is not widely understood. Every year there are around 19,000 neonatal deaths (within the first 28 days) in the U.S. Behind each of those deaths is a family trying to make sense out of what happened. Our job as nurses is to help however we can as they grieve their loss. So, to help shed some light on the subject of newborn bereavement, I decided to interview Laurie Van Damme (pictured above).
Laurie works at our Brandon Regional Hospital in Florida. She coordinates the Perinatal Bereavement Program at Brandon and is passionate about helping families who experience the devastation of losing a newborn. Laurie received the Frist Humanitarian Award in 2008 for her leadership in launching this program. The Frist Award is the one of the highest honors an HCA employee can receive. Laurie also works within the community, providing education to physicians, nurses and office staff on the effects of perinatal loss and the importance of helping these families create memories.
I contacted Laurie to learn more about her work helping parents heal after the loss of their newborn. If you have additional questions, feel free ask them in the comments section
How did the perinatal bereavement Program at Brandon Regional begin?
(Laurie) – Brandon Hospital has always supported families experiencing perinatal loss, although the way in which we have done so has evolved over the years. In 2007, we officially launched Cherished Moments, our current bereavement program, but the journey to its unveiling actually started with a boy named Adam in May of 2004.
Adam was born at 36 weeks gestation and lived only a few brief moments. I remember the moment when his father handed Adam to me because he could no longer carry him through his sobbing; I stood there holding this precious little boy in my arms and instinctively rocked him as though he were still alive, and I remember how utterly helpless I felt in that moment.
I knew we would take Adam’s footprints and a few pictures to send home with his family, but these gestures seemed inadequate for such a deep and life changing loss. As I stood there, I found myself wondering how life would go on for this family. How could they remember him before they’ve even had a chance to make memories with him? For reasons that I do not fully understand, I felt a deep need for Adam to not be forgotten or the significance of his life marginalized.
Before we get into the specifics of the program, can you say a little about why it’s important for a program like this to exist in the first place?
(Laurie) – The importance of these types of programs cannot be stressed enough. The natural thing for one to do when a loved one passes away is to reflect and reminisce on special memories and times shared with that person. We often use photographs to jog our memory about certain events and certainly as a way to keep the person’s image alive in our minds. Can you imagine not having one single picture of a loved one that has died? This is no different for families who have experienced perhaps one of life’s greatest losses—the loss of a child. In fact, because they have not had the opportunity to share life with their baby and create the memories that go along with that, I believe it is even more important that families experiencing perinatal loss are provided with visual keepsakes such as photographs and remembrance videos.
The time spent immediately following birth is the only time that will ever be spent with this baby, and the memories created during this time (or lack thereof), will stay with this family forever. I will even go as far as to say that this experience can either support or hinder one’s journey through grief.
As health care professionals, it is our responsibility to do everything we can to help our patients in their time of grief, loss, and vulnerability. No one is ever really prepared for the loss of a baby, and parents don’t know or realize what it is that will help them grieve and heal in the upcoming weeks and months because they have not read the research that we have. That is why it is so imperative that we are properly trained in this area and that we provide this type of information to them. We should know, as nurses, that many families won’t initially see the importance of something as simple as taking pictures to remember their baby. So it’s our job to ask multiple times and give an explanation of why we take them. In fact, a study published a few years ago showed that not only will many families decline pictures of a deceased infant when initially asked, but that it wasn’t until the third time they were asked that they agreed to it. What if the nurse had only asked one time? How many families would leave the hospital without anything to help them remember their baby? The enormity of this can’t be stressed enough because the consequence can be devastating to a family
We should also know that of those who do not receive pictures, almost all will have regrets of this later. The same is true of spending time with the baby. This is something that should be introduced not just once, but should be talked openly about and discussed with the family, even encouraged, because this is the one and only time they have with their baby. If presented in an appropriate way, families are almost always very receptive because they trust us as their caregivers.
The other thing that many do not realize is that the shock of the situation, tremendous grief, the depth of emotion, the high level of stress and the use of pain medications in labor can all impair the memory of their experience. This is another reason it is so important to take as many pictures as possible and creatively document the moments shared in that room. They are special moments like no other, and we have the awesome privilege and responsibility of being a part of such an intimate and special time. If we are successful, we will give our families a gift that will not only be treasured for a lifetime, but will also bring healing to our patients. And isn’t healing what we do?
How does the program work?
(Laurie) – Our bereavement program supports every patient experiencing perinatal loss, whether through miscarriage, stillbirth, or neonatal death, and all staff working in women’s services (as well as the operating room) have received special “sensitivity” training. Our bereavement team members have received hours of in-depth training.
We experience more stillbirths than neonatal deaths, so most of our patients experiencing loss come to us just before labor starts. They know that their baby has recently passed away. During or immediately after the birth, a trained labor and delivery RN is at the bedside solely for the purpose of capturing memories for the family. She encourages the family to hold, bathe, and dress the baby. The nurse photographs each activity. If the family is not feeling up to it, the nurse will do these things. Footprints and hand prints are taken, as well as clay molds of the feet and/or hands. Dozens, sometimes hundreds of pictures are taken. Often these pictures include other family members, siblings, extended family, and even religious rituals, baptisms or prayers. The purpose is to allow, encourage, and promote special moments and memories for the family, and to capture these special moments in pictures that tell a story.
Our program provides other items and memorabilia including infant clothing, blankets, trinkets, printed literature and a memory box. Research reveals that the most treasured keepsakes are the photographs; so this is where our focus remains. Our nurses take that one step further by a providing our families with a slideshow video that includes the healing power and emotion of music. The videos are often shared with other family members and friends and played at memorial services.
In addition to the keepsakes we provide for families, we also have a beautiful Pregnancy & Infant Loss Remembrance Garden, Adam’s Garden, and the name of every baby is written on a ceramic tile and placed within the garden. Adam’s Garden is named after the little boy I spoke of earlier and is a place where life is honored regardless of gestational age. It is also home to our annual remembrance ceremony, a community outreach event that draws nearly three hundred people each October 15.
It’s important to recognize that grief is not associated with gestational age, but related to the level of attachment. This occurs differently and at varying times for each individual, thus it is important and necessary to support losses at EVERY gestation, including very early losses. The support we provide may differ depending on the gestation of the loss, but each family is equally important to us. A great majority of the bereavement photography and videos that we provide are for families experiencing losses between 15 and 26 weeks gestation.
Given your expertise in this area, can you tell us if these types of programs are increasing in number? Are you seeing any new developments in perinatal bereavement?
(Laurie) – Yes, these programs do seem to be increasing in number, but I think even more significant is that existing programs are improving their processes and providing care that is based on research rather than tradition. There is a great deal of research about the effects of perinatal loss and the ways in which health care workers can best support these patients, but the demands of a busy unit and a lack of proper training can often hinder the use of best practices. Programs like Resolve Through Sharing (RTS,www.bereavementservices.org ) have been instrumental to the advancements made in the area of perinatal loss over the years, but the real-world hospital experience of the bereaved still shows need for improvements in the area of implementation. Of course, individual programs vary significantly from hospital to hospital.
One particular development that I am especially excited about, because it was started here within HCA, is the offering of remembrance videos to our patients, which has received a tremendous amount of positive feedback not only from our patients but also from the community as a whole.
These types of videos have been around for years and have even been provided to a small percentage of bereaved families, but that was the problem: only a small number of families were receiving them. This was in part because it was non-hospital employees providing these services and patients are not often in the frame of mind to consider or want outsiders present and taking pictures of them during this physically and emotionally intimate time of birth and grief. Additionally, creating these videos required a great deal of time and technical skill; however, software programs like Healing Moments, created especially for hospital perinatal bereavement programs and geared towards the novice user, make this process very simple (seewww.healingheartsmedia.com for more information).
What we offer at Brandon is unique in that everything we do is provided in-house by our nursing staff who are not only very familiar with infant loss, but who are also trusted by our patients. We are the ones they look to for direction during this difficult time, so it is only natural that we offer and provide this as part of our standard bereavement care. As such, this service is provided to all of our patients, not just those who request it, because most never would.
Can you tell me more about how this became a passion for you?
(Laurie) – I had always grieved for and with families experiencing perinatal loss, but it was really during that first experience in 2004 with Adam that I talked about earlier when I realized we weren’t doing enough to support these patients. Almost three years later, the answer I was searching for came when I created the first memorial, or “remembrance” video as we like to call them. It was simply a compilation of pictures set to music and beautifully packaged as a keepsake for the family.
I received a phone call from the grandmother soon after and she shared how meaningful the video was to her and to her family. That moment changed my life. It was then that my career and my passion turned into my life’s calling and I knew this was what God wanted me to do for our patients. From that moment on, the videos continued and so did the letters and phone calls of appreciation, and in many ways, it was because that one grandmother took a moment to pick up the phone and tell us how much the video meant to her.
Is there a way the community can be a part of a program like this?
(Laurie) Yes, absolutely! It’s important for our families to feel the love and support of their community, and attending an annual pregnancy and infant loss remembrance ceremony in your area is a great way to show support and raise awareness on the subject. Pregnancy and Infant Loss Remembrance Day is October 15.
Laurie, thank you for taking the time to chat with me.
(Laurie) – My pleasure. Thank you.