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Beacon caregivers reflect on grieving the death of a child

“Coping the loss of a patient sometimes starts for me before the patient has even passed away. It usually starts at the point when I realize that the patient that was once taking agonal breaths is now just letting the ventilator do all the work for them. This is usually the point where I know that the patient is no longer going to make it.

“Up until that point and even after, it is about getting to know the family and who the patient was before I met them in this situation. It is all the silly photos, videos of them singing and dancing, and all the other details that make them so special. These little details are what I remember later on for example, every time ‘This Girl is on Fire’ comes on the radio, I’m reminded of my teenage patient who loved to sing it at the top of her lungs. It comes in the form of the memory making that we do with each patient, it helps with the coping of the family as much as it is for me. From choosing which lock of hair they would like as a keepsake, maybe it is a special curl or a certain piece of hair that was always out of place, to making molds of their hands and feet for them to cherish for the years to come. It is in the perfect recording of the patient’s heartbeat, set to a song chosen by the family.

“After the family has left I am able to spend some time alone with the patient, rocking a smaller patient or holding the hand an older patient, to big to fit in my lap. I cry with them, they may not have been my child; but for a short while, I cared for them as if they were my own. I say a prayer for them and their families. I help families cope with the loss of their child by them seeing the care that I put into taking care of their child as if they were my own. I want them to feel that we have done everything that we could to save their child.”

Sarah Horvath, RN

“I have been doing Labor and Delivery for 8 1/2 years now, and it never gets any easier to care for a mother or family in the loss of their baby. I myself have 4 young children at home and to be in their shoes is unfathomable. I always try to help them cope the same way I would want someone to help me if I were in their situation. Most parents want an answer as to why their baby has passed away. Unfortunately, 98 percent of the time we do not have an answer for them.

“What I do have for them is a shoulder to cry on, (most of the time I am crying too) arms to wrap around them in this difficult time, and if or when they are ready, I have prayers to pray with them. I sit with them and let them know what a beautiful angel baby they have. I cleanse and dress their baby, then take photographs for them to keep. I give them a memorial box with keepsakes in it and I make sure they have all the resources they need when they leave the hospital to continue life after the loss of their baby. Most of all, I help them the way I hope someone would help me in their situation.

“Coping with the death of a baby has never gotten any easier for me. The biggest thing I have learned is that it is okay to cry. I used to think I had to have a “nurse face” while caring for parents who have lost their baby, but I am also human. I have a very sympathetic and compassionate heart. Crying with and without the patient, I believe is one of our natural ways of coping with the loss. I also pray with for the family for a few weeks afterwards and think about them often. I go home and cry as I hold my little ones and am thankful that I have them. Coping the loss of a baby is not easy for anyone, but there are healthy ways to do it.”

Jessica Miller, RN

“When dealing with an infant loss in the NICU, a lot of parents feel enormous guilt. Mothers wish they would’ve carried them a little longer even if it meant risking their own life. They reflect on their own actions because they see themselves as this baby’s protector and they feel that they have failed. It’s our job to be there for those parents and tell them that it’s not their fault- that this was not the result of any decision they made.

“It’s also important to tell them how lucky this baby was to have them. Compliment them as parents and build them up as much as you can. Also, talk about the infant. Many times in the NICU, the staff get to know these babies over the course of days to months. Talk to the parents about those silly things the infant did like smile when you sang to him or fuss during taking his temperature. Unfortunately, not many people were able to meet this baby, and the parents often find comfort in reflecting about the little person they were with people who knew him or her. Ultimately, when the medical options have fun out and the infant is not going to live, our sole purpose as nurses becomes giving this family comfort, closure, and peace to the best of our ability.

“Losing a patient you’ve bonded with takes a toll on nurses as well. Like I said earlier, we get to know these babies very well over time and we bond with them as well as their parents. So, when we learn that their prognosis is poor, we grieve as well. The hard part is, you’re often working. You don’t have the luxury of focusing too much on your feelings because you have to focus on caring for these babies. Sometimes you have to take 5 or 10 minutes to cry in the break room or a utility room and let yourself feel this deep sadness for just a few moments before regaining your composure. Sometimes you know you won’t be able to regain that composure, so you hold it in all day until you get into your car, and then you just sob and pray your whole drive home. It’s hard. It’s hard seeing wonderful parents lose the very thing that gave them so much purpose and hope. It’s not fair. You think back over the times you cared for this infant and you question everything. You wonder if there was something you missed. You wonder if you should have questioned those orders or picked up on a change sooner. Deep down you know you didn’t cause this, but you can’t help but wonder if there was anything else you could’ve done to avoid this fatal outcome. It’s challenging to get past. It crosses your mind often even weeks or months afterwards.

“In the NICU, we send out cards to the families who have suffered losses. We send them out right after the loss, after 6 months, and then around the year anniversary. In these cards we write messages to the family and one message used often is, ‘your baby will never be forgotten’. I hope parents know that there is truth to those words. I think about the infants that have passed on our unit quite often and I pray for their families to find peace following the devastating loss.

Emily Fredericks, RN

“There is nothing that will ever prepare you for hearing the cry of a mother who just lost their child. It’s a sound that will always linger as I sit and process the situations I have dealt with. I love my job and I do feel privileged to care for children in their last moments of life but it’s never easy. There are aspects of the situation that I feel grateful to be a part of. I take pride in providing the comfort of giving a child their last bath and keeping them comfortable. I enjoy being able to help these families through this difficult process. It is always nice to be able to provide families with keepsakes and memories such as footprints and hand molds.

“Unfortunately, I have been on both personal and professional side of this situation. My best friend just recently lost her 7 month old baby girl. It’s difficult to cope with this situation especially having to see it day to day at work. However, it has given me a new perspective in how important it is to provide for these families during the most difficult time. As a nurse, I have learned how to take time to reflect on the situation and understand that we did everything we could for that child and their family. Personally, my best friend and I have learned different ways to cope with her baby’s loss by spending time together, working on puzzles, baking, coloring, and crafting. I feel it is so important to talk about these situations and all of the feelings and emotions that come along with it. I personally cope by listening to music. Taking some “me” time to relax, spa days or getting my nails done, and just taking time to process what has happened and dealing with the emotions at hand.”

Emily Schultz, RN

“When children die, we lose not only the people they were, but also who they could have been, the birthdays they should have had, and the lifetime milestones they are not going to be able to achieve. Memories are the most important things to families in these cases, so when I am taking care of a child who has died, I make it my priority to facilitate any memory-making I can. We often do handprints, footprints, and recordings of heartbeats for parents. I also offer the parents the opportunity to bathe their child, hold them, and sleep as close to them as possible. Those moments are often difficult at the time, but become treasured memories in the coming months.

“Sometimes, their questions cut deeper than the situation itself. “Will I feel like this for the rest of my life? Will I ever be able to smile again?” “What did I do to deserve this?” “She is so loved. She never said anything about being depressed. Why didn’t she tell me?” The pain of losing a child lasts a lifetime, but it isn’t always as intense as it is in the first few moments or months. It changes over time, becoming less intense and more of a dull ache. The guilt a bereaved parent feels can last a lifetime as well.

“When the family leaves, the pressure to keep it together for their sake is no longer present and the gravity of what has just happened sets in. A physician once said, “We get to go home after our shift, but the family has to deal with this for the rest of their lives.” He’s not wrong, but the part that he left out was the fact that we take it home with us. Sometimes the loss of a patient makes me hyper-sensitive to things that my own child says or does and I react in anger or frustration. Other times, it’s too close to home or too real and the only thing I can do is cry on my drive home or in the shower after work, unable to explain to anyone why.

“I remember the children that we couldn’t save and I carry them with me every day. I treasure the stories, pictures, and videos that the families share. I remember their names, their faces, and the color of their hair. I never forget the sound of a parents’ cry when they realize they have lost their child and the future they had hoped for. That sound is so guttural and distinct. I experience a physical pain in my chest every single time I hear it because I know. I know that only the most inhumane pain can make a human sound that way and it breaks my heart that with all the training and knowledge, we couldn’t protect them from that pain.

“I may go hiking if weather permits to clear my head after a rough shift. I’ve made plans with other nurses to go zip-lining or ax-throwing to relieve stress when we’ve all had rough days. We meet up for food and fun times, or just call one another to talk when the day has been too much. I rely on my coworkers because they understand the things I don’t say; the parts I have to leave out for now because it still hurts too much.

“Many people ask me why I choose to work in pediatric ICU and my only response is that I love what I do most of the time and on the bad days, I just try to stay positive and breathe. However, my outlook on bad days changed this summer. I was part of Beacon Children’s first honor walk and got to experience how powerful our hospital is. The faces I saw as we made our way from PICU to surgery were not painted with pity, but instead were overflowing with support for us and admiration for our young patient and his very brave, selfless mother. Memories of that day and the days leading up to it are still difficult at times, but each I get dressed and go to work knowing that if the unthinkable happens, we have an entire hospital ready and willing to lend support. I can’t describe what that means to me.”

Heather Berry, RN

“How do we help families cope? The biggest part is that we show up and be there to hear stories or dreams they had for their child or baby, and answer the practical stuff like funeral and where the bathrooms are. I actually think the hardest part for families is often a week after the death because all that practical stuff is usually done. In that first week they can get occupied with planning funerals and arranging to get family in town and making picture boards for the funeral and all the stuff that we do when someone dies. After that service is done, we are stuck with the grief and there is no outlet or way that we can ignore it or stuff it down.

“Every May the hospital has a service of remembrance for all the babies and children who have died at Beacon Children’s Hospital and families who come usually cry a lot. It’s like they are not sure a safe outlet for grief so a memorial service is a place where it is okay to be messy and sad. There is no special set of skills to be present with someone when they are messy and sad, but it is the hardest kind of presence to give.

“I tend to cry at weird places and I am realizing that it is some of the disenfranchised grief from having patients die. Grief over someone else’s child in the hospital is not socially accepted unless you are blood family member or have a close connection to the family. But “close” in the hospital can be that I have seen them every day for a week or that a nurse has cared for that child for a 12 hour shift. Our grief, as hospital associates, can become disenfranchised grief where we are heart-broken over the loss of a child (and often have transference to our own children and life situations), but we are not given permission to mourn and grieve. Rather, we put on our “professional face” and pretend to be fine. Yet when there are things like an honor walk for a 12 year old boy, we all cry a lot, and it is for more than just that little boy. I am certain it is crying and grief for the 20 other little kids who we couldn’t cry for.”

Sarah Samson, Spiritual Care Coordinator, Memorial Hospital

“In my OB profession, I have seen and experienced my fair share of loss. We care for many families who experience the death of their baby. We provide the utmost compassion and respect for these families. We make every effort to allow them the special time they will have with their baby, and help to create mementos for them- hand and foot molds if possible, footprints, lock of hair if possible and pictures. We provide families with a memory box to honor their baby. The loss of a child is the most unimaginable experience and as nurses we are here for the patient and her family in any way possible. It is so hard to watch patients and families go through this unimaginable experience- for many, the thought of their child passing away is the furthest thing from their mind.  Families may experience loss during their first trimester, second trimester, third trimester, or even experience a neonatal death. These families lives will change forever, and they need all of the support they can receive, from us as caregivers, as well as from their families, and their support systems. Experiencing a loss myself, I have taken a passion in bereavement care for patients and families experiencing a fetal or neonatal loss. My hope is for families to take the time to grieve, which sometimes can be a life-long process. Be gentle with themselves and allow themselves the space and time to process. Reach out to others for support when needed.”

Lauren Rose, MSN