The experience of receiving a prenatal diagnosis of a life-limiting condition leaves families with many questions and complicated emotions to navigate. A key part of feeling fully-informed and equipped following a diagnosis, throughout pregnancy continuation, and in the bereavement period that follows loss, is having access to the insight and support provided by a multidisciplinary care team. Each member of a family’s care team serves a unique purpose, and Carrying To Term is here to help shed light on the role of each professional.
Carrying To Term was fortunate enough to have the chance to talk with Ellie Dalsheimer, a neonatal intensive care unit nurse, about the role NICU nurses in the care of families facing a prenatal diagnosis of a life-limiting condition. Not every family facing such a diagnosis will experience the NICU, but for the families who do, NICU nurses play a pivotal role in supporting, empowering, and informing these parents. Ellie has dedicated her career to caring for not only the tiniest, most fragile patients but also the parents who are deeply impacted by this experience. Her compassion, experience, and dedication are evident in her words, and it is our hope that this conversation highlights the importance of NICU nurses for families facing a diagnosis and a NICU stay.
What inspired you to become a nurse? Why did you decide to dedicate your career to caring for babies in the neonatal intensive care unit (NICU)?
When I was about eight years old, I told my mom that I wanted to be a neonatologist. How I knew what that was, I will never know, but I just knew that working the NICU was what I was meant to do. As the years went on, I realized that I did not want to go through medical school, and that is when I decided I wanted to go to nursing school. In high school, I was fortunate enough to spend some shadowing hours in the Duke NICU. I was sold. I felt this calling to serve this specific patient population and the families going through one of the most vulnerable experiences of their lives. I feel so blessed that I was able to get a job in the NICU right out of nursing school. I can’t imagine doing anything else. I truly love my job beyond words.
Not every family who receives a prenatal diagnosis of a life-limiting condition will experience the NICU, but there are families whose experience does include time in the NICU. What is the role of NICU nurse before, during, and after labor and delivery for these families?
In both hospitals that I have worked in when a family is told they are going to have their baby early or have been given a life-limiting diagnosis they get a tour of the NICU. During this tour, the families are showed the different machines used in the NICU and the different types of beds that the baby will be in. I think these tours help with the initial shock of coming into a NICU, but I don’t think anything can really prepare you for what it is like seeing your baby with wires, IVs and breathing machines on them.
I think as the nurse admitting or bringing a family into that intense setting, we need to be the calm in their storm. If something looks scary but really isn’t, we are there to tell them that. We are there to explain every alarm, so they know which ones to be worried about and which ones not to be. We are there to explain the vital signs- what is normal and what is not. We are there to explain why they have an IV and that the baby may need more than one IV. We are there to explain what the breathing machine is doing- whether it is just there to help keep their baby’s little lungs working, or whether it is being used as life support. Prepping parents for what they can expect during this stay is hugely important. How parents hear this information for the first time and how both mom and dad are treated from the moment they walk through the door changes the way they will experience the NICU, whether their stay is long or short.
In my current job, we frequently see families come back to the hospital with their baby with a life-limiting diagnosis. They get readmitted because the baby was dying at home, and they were not prepared to navigate that alone. This happens sometimes when these families do not have a clear understanding of their baby’s diagnosis and prognosis. Sometimes, this happens because they get home and realize that they do not want to or cannot go through the process alone. Some families really benefit from having nursing support around the clock in a NICU setting; other families prefer to navigate this experience at home with hospice. Either choice is valid. The hope is that these families are informed about their options, empowered to make the best choice for their family, and supported when they do make a choice.
The NICU experience and being a NICU nurse is about more than just the baby and caring for that baby’s needs. The NICU can be traumatic and overwhelming for families, and you, as the nurse, are often the main source of information, support, encouragement, and comfort for these families. What is the relationship between NICU nurse and NICU parent like and why is this relationship so important?
Whenever I admit a new family or meet a family for the first time, my number one priority is to immediately foster a relationship with the parents. I prepare them for what they can expect during their NICU stay, and throughout the stay, I make a point to update them about their baby’s day and call their baby by name. I think, sometimes, we forget to ask parents to do the things that might seem little to us but feel big and important to the parents, like changing their baby’s diaper or taking their baby’s temperature. These little tasks involve the families, and they empower the parents to feel more comfortable and assured in their role as the baby’s parents.
I also make a point to encourage the parents to ask any questions they might have, even if they have asked it a thousand times before. A NICU nurse should always try to support the parents and remind them that we are here for them and for their child. The way we interact with the family molds how the family views the care that is being provided to their baby. I always tell parents that if they have a concern about something going on, have any questions, or feel the need to advocate for their baby, they should speak up. Parents have intuition that sometimes the beside staff misses. No matter how long the stay is or how short a baby’s life might be, I always tell the parents, “you are still the parent, no matter how out of your control this feels sometimes.” It is easy for parents to forget this and feel like they have no control regarding care or what is going on.
I see nurses sometimes fail to be the nurse for the family, not just the nurse for the baby, and it breaks my heart. I know that it is possible to be the best nurse to both. The more uncomfortable and stressed the parents are, the more stressed the baby is. During skin-to-skin time, it is amazing to see how much a comfortable and calm parent can affect how comfortable and calm the baby is. As the nurses, we really impact how comfortable and calm the parents are when they come in to visit.
The experience of being discharged from the hospital and going home without their baby can be very overwhelming and devastating for parents. This is true in both circumstances where a parent is discharged but their baby is still in the NICU and in circumstances where the parent leaves the hospital after their child has passed away. How do you help prepare families for the difficulties of going home without their baby?
As a NICU nurse, I think this can be the hardest part of our job. Sometimes, we don’t do enough for our families because so many other disciplines are involved. Chaplains and social workers take over a lot of the prep with the family when a patient is lost on the unit, which is invaluable support. However, we, the nurses, have been by the family’ side, and I think it is critical to their grieving process that we are involved and offer our support.
When a loss is expected, the family’s nurse has more time to be involved in the process. We can help them cherish the time they have with their baby. We can help them make memories. We can be there to prepare them and support them as a whole family through the process. When a loss is sudden or as the result of a code situation, the nurse can feel overwhelmed by the experience. We are invested in our patients and their families, and we, too, are overcome with emotion and grief.
When parents are discharged, and their baby is staying in the NICU, I always encourage them to take care of themselves and not feel bad about doing so. This experience is overwhelming and exhausting, and the best way for them to care for their baby is to care for themselves. We are here to support their baby, and we tell the parents that their job is to trust us and take care of themselves, so they can be their best selves when their baby comes home. For families who know a loss is coming, we still want them to take care of themselves. We are there to care for and love their baby when they cannot be at the NICU, and taking care of themselves during that time will help them cope with the loss.
When a family leaves the hospital after their child has died, I believe that how the nurse handles this experience is determined by how the family is processing their grief. There really is not a clear-cut or right way to do this. We have a checklist, and there are different things that we can offer to the families. We let the parents know that we can take pictures for them, help them give a last bath, take hand and footprints, and help them create other keepsake items. Some families have strong feelings about whether or not they want pictures, and while we always offer this option, we are there to honor the wishes of the family during this time. If we go against their wishes, these parents will never forget that. This process is not about what the nurses want, how the nurses are grieving, or what the nurses think the parents should want or how the parents should be grieving. We are here to make sure this experience is how the parents want and need it to be, so they can cope with the loss.
We encourage carrying to term parents to gather and utilize a multidisciplinary care team that includes their obstetrician and/or midwife, perinatologist, specialists, as needed, like pediatric cardiologists or neonatologists, palliative care, geneticists, social workers, nurses, doulas, therapists, and chaplains. How does a NICU nurse contribute to a multidisciplinary care team for carrying to term families?
I am a firm believer in involving as many disciplines as needed during the care for carrying to term families because a holistic approach has a powerful impact on these families. The NICU team is there to prepare the parents for a possible NICU stay, but until a baby is actually admitted to the NICU, we don’t have much of a role. When we are involved in the care for carrying to term families, our contribution is to make the baby as comfortable as possible and allow for as much bonding time between the parents and the baby as we can. The NICU nurse’s role is to help support and honor the parent’s wishes and needs during this time. So, we encourage a lot of hands on time, holding, talking to their baby, taking pictures, singing songs, and any other parenting experience they want to have in the time they have with their child.
Each NICU and grief experience is wholly unique, regardless of the circumstances, and there are often many unknowns that come with carrying, delivering, and potentially parenting a baby with a life-limiting condition. What advice do you have for our families who are preparing for this experience after receiving a prenatal diagnosis of a life-limiting condition?
Every single pregnancy and delivery are different. When there is a prenatal diagnosis of a life-limiting condition, the grief process begins early. The initial joy and excitement of being pregnant changes, and parents experience a huge range of emotions. My advice to these families is to not judge yourself for the feelings that you have during this time. You are human and need to process the news that you have received. Feeling grief or anger or sadness or fear doesn’t change how much you love your child or how blessed you feel to be their parent. Being given a prenatal diagnosis of a life-limiting condition may feel so incredibly heavy, but the heart and love of a parent is so incredibly powerful. This experience is not easy, but I have seen the kind of strength these parents exhibit. Every single parent does the best that they can, and it looks different for each family. We are not here to judge what that journey is like for you, and I encourage every parent to let go of any judgement they have about how they are handling this experience.
Many families worry about the potential traumatic elements of laboring, delivering, and navigating the NICU experience with a baby only to have to say goodbye shortly after. Some families worry about how their baby will look. Other families wrestle with the decision to have pictures taken or allow family members and friends to visit. Some families struggle to know when and how long to hold their baby, especially when that baby seems fragile, he or she is hooked up to machines, or after he or she has died. What advice do you have for our families about such an emotionally charged and complex experience?
This experience is a hard one to navigate, and NICU nurses are here to help guide the parents through it. We are happy to help parents navigate through these hard questions in the moment. My advice to parents is to think through some of these questions ahead of time, especially about pictures and visitors. If parents know that they will want extra support from their family and friends, they should talk about who those people are before delivery. They can change their mind once they are in the moment, and there is no right or wrong answer, but having a plan ahead of time helps parents navigate the emotionally charged experience of being in the NICU and making the most of the time they have with their baby.
We do our best to prepare parents for what they will experience in the NICU, from how their baby will look, to what the machines they can expect to see, to what their contact can be like with their baby. When a parent wants to hold their baby and has hesitations, we are there to remind them of all the reasons that their baby will benefit from the contact. We help them pick up their baby and get comfortable holding that baby. We stay close by in case they need anything or have any questions. There is no question or concern that is stupid or ignorant. This is what we are here for.
Bonding with their baby is an incredibly important part of the carrying to term process, both in pregnancy and after the delivery. How does a NICU nurse encourage and support this bonding experience? What advice do you have for carrying to term parents who are navigating a NICU stay with their baby?
In my opinion, part of the responsibility of the NICU nurse is to help empower the parent to know how to bond with their baby at all stages of their stay. This is so important, especially in cases where the baby has a life-limiting diagnosis. There is no circumstance that prevents a parent from bonding or making memories or parenting in some way during a NICU stay. When a baby is too sick to be held, I remind the parents that they can still be involved. It is crucial to encourage the parents to be involved in “touch times” by having the parents change diapers and take their baby’s temperature. If their baby is able to be fed breastmilk, the mother can pump milk for her baby. The parents can even take a piece of cloth and wear it on their body so that the cloth absorbs their smell; then that cloth can be placed under the baby’s head as a comfort item. Parents can bring in books to read to their baby or sing them songs. I work with parents on containment holding, where they can put their hands on their baby without removing the baby from the bed. Think of it like hand swaddling or hand hugging the baby.
Parent involvement and bonding is so important that I will push for babies to be held even that means I have to get a doctor to put an order in for it as way to assure parents that holding their baby is good and safe. In cases where the baby is going to be removed from life-sustaining treatment, we highly encourage parents to be with and hold their baby for as long as they want. We let the parents tell us when they are ready. We always ask if the parents want to be involved in the final bath, have pictures taken, or if they have any other requests before the baby passes.
Bonding looks different for every family, so I encourage the parents to speak up about what they want and need. We are here to help them. We are here to ensure that this experience is the least traumatic experience possible. We want them to have good memories and be able to cope with the loss when they leave.
As a nurse who has played a critically, emotionally important role in the lives of grieving parents, what have these experiences been like for you? How does being present for these beautiful, broken, life-changing moments affect you? How have they shaped how you continue to serve families as a NICU nurse?
I think every parent that steps foot into a NICU is grieving in some way. For some, it is the loss of their baby. For others, it is the loss of getting to take that baby home right after delivery. These parents are feeling in ways I cannot even imagine, and I believe that how we respond or speak to these parents completely changes how they experience the NICU. One of the biggest lessons I have learned is that a first impression is everything. How you begin the relationship with a family is the foundation. Every good interaction with the family of my patients reminds me why I do what I do, and every hard or challenging interaction reminds me that there is always room to grow. Everyone has such a different NICU journey, and grief is so different for every single family. Everyone has different needs, and every single family is fragile in their own way during this time. I just try to honor that experience for each family by learning what they need and want and how I can best support that.
Many of our families feel very grateful and connected to the professionals who helped them navigate their experience and who were present during the most difficult moments of their lives. Many families have shared that they have stayed in contact with their nurses and doctors over the years. Has that been true for you? What has that been like for you? Do you have any words of wisdom and encouragement about that experience for both the parents and your fellow nurses?
I love staying in touch with families whose lives I have touched by caring for their child. I find it an honor to stay close to these parents who I have seen in their most vulnerable states and been such advocates and fighters for their babies, whether those babies survived or passed away. I feel incredibly lucky when I get to watch these sweet miracle babies grow up and become strong kids, and I feel inspired when I get to watch the parents who lost their babies create a legacy in honor of their child. Sometimes I think we are the only people that can ever really understand what this time of life was like for them. So, I think staying connected to us important for them as they cope and process that time.
I encourage parents to also seek out support from other parents who have gone through this experience. No one understands the NICU life like another NICU parent. No one understands the experience of losing a child like a parent who has lost a child. For the nurses, I think keeping in touch with families is amazing, but I do think that some nurses need balance and time away from work. The weight of these experiences might be too heavy for them, so my advice is to find the right balance for yourself. For me, I have no problem staying in touch with families, and there are families who I don’t have contact with that I wish I did.
After navigating a prenatal diagnosis, potentially a NICU stay, and the loss of their baby, parents may struggle with the idea of a subsequent pregnancy down the line. What advice do you have for parents about navigating pregnancy after loss in light of the trauma, grief, and love they have experienced?
I don’t think that a parent ever stops grieving a loss of a child. The love that you have for your child will always be there. You can honor the life of your child every year, day or minute- however often you want to. The next child or pregnancy is not to replace the child you have lost. The love you feel for the next child will be just as wonderful and special in its own way. It does not have to take away from the love and grief you feel for your other child. I think sometimes, as humans, we forget that we can feel many emotions at once. We can be sad about a loss and still happy and blessed that we have a healthy child. One feeling does not have to take away from the other. At the end of the day, grief doesn’t come with a handbook, and every journey is different. Honor your journey by feeling however you need to feel at each step of the process.
Any final words of wisdom, hope, encouragement, or support for our families preparing for this experience?
Parents, your nurses want you to feel supported. Please reach out when you feel like you need to. Allow people to be there for you. We are here for you to lean on, to cry on, and to help you navigate through this time. Please never feel like you are burdening us with your struggles. We feel honored when you trust us to share. No journey is more than you can bear, and we are here when the weight of your journey feels too heavy. You inspire us, parents!
WHO WE ARE
Ellie Dalsheimer, RN BSN is an experienced neonatal intensive care unit nurse, currently working at Children’s Health in Dallas, Texas. After completing her Bachelor of Science in Nursing at Curry College in Boston, MA, she started her NICU career in Austin at North Austin Medical Center. In her role, she attended high risk deliveries, cared for tiny micro preemies, and supported families through some of their hardest days. A year and a half ago, Ellie transitioned to Children’s Health, where she serves as a charge nurse working with babies who have very complex medical diagnoses. In addition to caring for medically fragile babies, she offers support to families and helps them transition from one hospital to another. Ellie is passionate about making sure that families are very well informed about and involved in the care of their babies. This past year, she completed perinatal bereavement training through Resolve Through Sharing, and she now uses that training and tools to help educate and advocate for the nurses and staff she works with in Dallas. Ellie is recently married and has two Australian cattle dogs.
Carrying To Term is a national 501(c)(3) nonprofit organization dedicated to broadening access to non-directive educational, logistical, and emotional support resources for prenatal diagnoses of life-limiting conditions. For more information, please visit www.carryingtoterm.org.