Care After Baby Loss: Reflections from a Patient and Parent
Content Warning: This post discusses premature birth, NICU care, medical details, end-of-life care, infant death, and grief. Please read at your own pace, take breaks if you need them, and take care of yourself as you read.
By: Jessica Gutierrez, founder of Calm-hearted
When my son Nathan was born at 31 weeks, I became a first-time mom in circumstances I never imagined. He was so little in his incubator in the NICU, and I was recovering from an emergency C-section while trying to understand what our days ahead would look like.
Nine hours after my surgery, my husband, Jordan, wheeled me down from the L&D unit to meet our baby boy, already familiar with the NICU protocols that he had learned while I was recovering. I was overcome by all the love I had for my husband and the little human we made together.
Once my own checks, bloodwork, and appointments were done for each day, I would finally make it down to the NICU, and I remember the nurses saying, “Oh! Your husband is the Dad who is always here with your baby.” I was a little jealous of all the time Jordan was getting to spend with Nathan, but I was really proud and unsurprised that my husband was a great parent from the start. I knew my baby was safe with the NICU team and had his Dad with him even in the moments where it felt like I had endless people coming in to check on me and I could not be with Nathan.
Jordan and I had begun preparing ourselves for what could be 4-8 weeks of a NICU routine, visiting our son at the hospital after I was discharged. But three days after he was born, Nathan died.
We didn’t know that he was born fighting an infection, and the NICU care team was following the usual clinical course of care and treating him as symptoms came up. Things had gotten worse overnight, but he was stable and we had a plan for his care. By that afternoon of his third day earthside, he was gone, and it felt completely unexpected.
I remain deeply grateful for the medical care Nathan and I received. I know that the people taking care of us were working within an extraordinarily difficult situation, and I do not look back expecting anyone to have had perfect words or to have been able to make an unbearable outcome somehow bearable.
What I have realized since, though, is that I remember much more than the medical event. I remember who spoke to us and how, what was explained and what I had to ask for, and what the experience felt like first as new parents and then as grieving ones.
This is my reflection of the moments that stayed with me and what those moments might offer to providers supporting another family through loss.
Reflecting as a patient and a parent
Before Nathan died, I was trying to understand how to be both a patient and a parent at the same time.
I had just had my first baby and I was recovering from major surgery. We were feeling pretty shaky about the past 15 hours: from my water breaking in the middle of the night, to waiting and hoping that the baby would stay in longer, to going into my emergency C-section. Jordan was fielding communication with our parents, going home to make a belated hospital bag, and thinking through logistics.
Suddenly, along with our midwives, there were nurses, obstetricians, NICU physicians, and other healthcare providers whose names and roles I was trying to remember.
I remember the names of the L&D nurses who took care of me while NICU nurses took care of Nathan. After he died, I remember wishing that my nurses knew what had happened to us. I wanted them to get some closure and to know that, despite the devastating outcome, I remembered their excitement about my son’s birth, their patience as I tried to understand the details, and their care through my own recovery.
It meant a lot to me that my OBs came to see me after my surgery to check in. I have since seen my primary OB for postpartum check-ins, and the kindness she showed me then has become part of the trust I still feel in her care now. As I try to hold hope that we may have another baby one day, it matters to know that she already understands what we have been through and will be there to care for me again.
I moved between being monitored as a surgical patient and trying to spend as much time as possible with my son.
There were moments when I found myself speaking up about details that felt important. When someone referred to the wrong gestational age for him, for example, I corrected them. It may have not been critical information, but in so much uncertainty, I wanted to be precise when I could.
A parent may be frightened, medicated, sleep-deprived, or recovering physically and still be paying close attention to how their baby is spoken about and cared for. We may ask questions, correct information, or want to participate even when we do not fully understand what is happening clinically.
Making space for that parenthood can be as simple as explaining what is happening, acknowledging what the parent knows about their own baby, and continuing to address them as someone with a role in their baby's care.
Jordan appreciated that the NICU team allowed him to sit in on rounds. It kept him informed of our son’s care and the goals of each day, and it helped him translate updates to our immediate family when we could. I have a harder time looking back at the first time I participated in rounds because it was the day that Nathan ended up passing away.
Navigating when care changes
I don’t dwell on the experience of watching my son die. It’s such a personal part of our story, but I will share parts of it that I feel might be relatable for someone grieving a loss or helpful for a care provider seeking a parent’s perspective.
I believe that Nathan waited for us. He had coded before we were back in the NICU after having lunch out, and then while we were there, he coded twice more. There are no adequate words for the horror and heartbreak of hearing a code pink and realizing the rush of people is there for your baby. If I think too much about it, I am haunted by the sounds of the team working around him and feeling helpless only feet away, immobilized with fear and disbelief.
The doctor brought us to a side room and explained that they had exhausted all options. As his parents, we made the hardest decision we could ever make: telling the doctor that we did not want to continue Nathan’s suffering. The doctor guided us toward understanding what further intervention would mean, while still allowing us to arrive at the decision as Nathan’s parents. I think that, had we not been able to get there ourselves, he would have needed to make the recommendation more explicit.
As the team began removing wires and disconnecting him from the ventilator, I remember asking whether it was okay for me to touch Nathan’s leg. The response was something like, “Absolutely, you can,” with a hint of surprise that I had even asked. But I was worried about getting in their way. I had spent the previous days being so careful as the parent of a NICU baby, and I had not yet understood that the medical situation had changed and that these were my son’s final moments where I did not need to hold back. I wish I had been explicitly told that I could be as close to my baby as I wanted to be and that I didn’t need permission to do something as instinctive as hold my own baby.
I appreciate that the doctor stayed right by our side from sharing the news with us to being at Nathan’s side until Jordan and I stepped away during the extubation. I remember asking the doctor if he was absolutely sure that this was the end, and he just gently said, “Yes, Mama.” Looking back, I think confirmation in a moment like this can be both medical and an opportunity to connect: explaining what is happening while continuing to recognize the people in front of you as this baby’s parents. In one of the most painful memories of my life, I was touched to still be called Nathan’s Mama.
I can’t remember who put Nathan in our arms, transferring him from his incubator to where we were in the private room, but I wish I had been a little more prepared for what could happen physically to my baby after extubation. I recognize how little time there was between Nathan coding, our decision for comfort care, and holding him. I do not know how much information we could realistically have absorbed. In hindsight, though, even a gentle explanation of what we might see, what the team expected, or how quickly they thought he might die could have reduced some of the uncertainty of holding him and not knowing what was happening. Eventually, the doctor came back to check for his heartbeat, and even though we already knew, his gentle wording of, “he is no longer with us”, provided certainty. As devastating as it would be to hear, I think I wish that he had said Nathan’s name.
After Nathan died, we were able to remain alone with him in the NICU room, and I appreciated that. We needed privacy, and I had advocated for it. We were initially told that they could set up privacy screens in the NICU through Nathan’s comfort care, but I said that I wanted to stay in the side room and for them to bring him to us. It allowed us to have privacy with our son while not being feet away from other parents and their living babies.
At the same time, there were moments when I desperately wanted to be left alone with my husband and baby, and moments when I wanted someone to walk back through the door and tell me what we were supposed to do next.
I’ve learned that privacy and abandonment can feel surprisingly close together in acute grief. I first felt that tension in the NICU after he died, but it has followed me into relationships with family and friends, returning to work, and learning how to move through the world as a grieving parent. However, at that moment, on that day that Nathan died, I felt so untethered. I think it would have felt welcome for people we trusted, like Nathan’s doctor, the nurses we had gotten to know over the previous few days, or the lactation consultant I had bonded with, to visit us in the room. It felt like things shifted when new people were suddenly in with us, instead of those who we recognized, performing what felt like “closing tasks”. I understand now that they likely had specific roles in the care that happens after a death, but at the time the transition felt abrupt. I didn’t see the team that we had spent the last few days with after Nathan died. From what I remember, new people just appeared; I know for sure that they never introduced themselves by name, and they definitely didn’t say Nathan’s or ours when addressing us.
That shift is one of the reasons I think care after baby loss can be considered as a continuation rather than an ending. The clinical goals may change, but I feel it’s important to still recognize the parent in the room who needs information, acknowledgement, and care.
Making choices in shock
One thing I think about often is how many decisions suddenly existed at a time when I was least capable of imagining their future significance.
The new people in the room offered us opportunities to make memories with Nathan, including bathing him. I chose not to because at the time, I wanted to just hold him close. His body was medically fragile, so I could not picture the process. I couldn’t comprehend what bathing him would involve, who would be there, how long it would take, or what it would feel like.
I have had moments of regretting that decision since, because I feel sad about missing a ritual that feels like such an ordinary act of early parenthood for a new baby. But I realize that I can’t measure those few hours against all the ordinary moments of parenthood we did not get to have. If I did, the list of things I wish for would be endless.
I can imagine that this is one of the hardest parts of memory-making after baby loss: parents may be asked to make irreversible decisions while in shock, without any ability to consider what they will wish they had done six months or six years later.
There is no way for a healthcare provider to solve that, but there may be ways to make choices easier to understand. I think we needed everything explained slowly, clearly, and repeatedly if need be:
What would the setup for a bath be like? Could we participate as much or as little as we wanted? Could we stop halfway through? Could someone else do it while we stayed close? Was there any urgency to decide?
We said no, and then it was never revisited. I wonder, if asked again an hour or two later, if I would have changed my mind.
Information that allows for choice creates a small amount of agency when almost everything else has been taken out of a parent's control. I think the most compassionate approach is to make the options explicit, explain what they involve, and then continue to stay in touch with parents through their decisions.
Understanding what comes next
After a baby dies, the administration to complete adds to the shock and pain. It started right there for us in that NICU room. There were a lot of papers, questions about contact information and how to spell our last name—details I assumed were already somewhere in our chart—and decisions to be made.
I remember being asked by the social worker about a funeral home, but we did not have a full understanding of who was going to contact whom or what we were actually supposed to do next. We waited, numb in the days after Nathan died, thinking that we would be contacted about what to do with his body. We didn’t realize that he was in the hospital morgue for longer than necessary, waiting for us to make the call to arrange his transfer.
We were also asked whether we wanted Canuck Place Children’s Hospice to contact us. I remember agreeing, but I did not really understand what saying yes meant, what support they might offer, or what would happen after I agreed. That led to the initial intake call with Canuck Place being challenging for me, because I hadn’t realized that they didn’t know any information about our loss due to confidentiality policies, so we had to verbalize all the details from start to finish. We are very grateful for the ongoing counselling support we have received from Canuck Place and for how receptive they were when I later shared feedback and suggestions about the intake experience for families referred from hospital rather than from within the hospice.
During a home visit, one of our midwives took both envelopes I had (the one I received after giving birth and the one we received after Nathan died) and thoughtfully went through them so that I wouldn’t have to. She removed or separated anything I did not need, added coloured paperclips and Post-it notes explaining what each section contained, and placed blank sheets before difficult pages so that I would not unexpectedly pull out something with the header “LIST OF FUNERAL HOMES.” It gave me the ability to choose what I was ready to see.
Being handed information and being oriented are not the same thing. A grieving parent may need someone to explain very plainly:
What happens to our baby after we leave?
What does the hospital arrange?
What do we need to arrange?
Who contacts the funeral home?
What does this form authorize?
If we say yes to this referral, who will contact us and why?
What information will the referred organization already know about us?
Who do we call tomorrow when we realize we did not absorb anything you told us today?
And because parents may not want to talk about all that in the moment, and shock can affect memory and concentration, it can also help to provide these details in writing so parents have something clear to return to when they are ready and able to take the information in.
After we left, I received follow-up related to my own postoperative care, but I do not remember a separate bereavement or social-work follow-up from the hospital related to Nathan’s death. In our case, our midwives helped with continuity, and at the time I had no desire to return to or hear from the hospital. I don’t know what, if anything, families normally should expect after leaving. I think that uncertainty is something worth addressing: briefly explaining what follow-up a family can expect, who may contact them, and who they can reach out to later could make the transition home feel a little less undefined.
Finding familiar support
We were asked several times after Nathan died whether there was anyone we wanted to call. It was a reasonable question, but we couldn’t articulate what we wanted or needed next.
Time warped in that room for me, and I don’t know when we finally decided to call Jordan’s brother, who had stayed in the area after meeting Nathan just earlier that day. From there, we called my parents to come too.
An open-ended question can be unexpectedly difficult when someone's brain is trying to process their baby loss. Gentle prompts may make the question easier to answer:
Is there family you want here? A friend?
Are you religious or spiritual? Would you like someone from spiritual care or a chaplain?
Do you have a midwife? A doula? When possible, some of this information may already be available in the patient's chart.
I also think support does not always have to come through more questions. In crisis, observing who a family already knows and offering specific people or services may be easier than asking them to generate answers. I remember looking for our social worker while Nathan was coding, and I later wondered whether someone in a psychosocial support role could have remained available to stay with me as his condition deteriorated. I do not know what staffing, roles, or other patient needs made possible that day, but I remember feeling the absence of that kind of continuity.
Maybe we could have been asked, “Is there someone on the unit you have connected with that might feel supportive to have here with you?” One of the people I felt closest to during our hospitalization was the lactation consultant because we were working towards something I could do for Nathan. She had spent time with me, knew my insecurities, and had become a trusted person. In retrospect, she is one of the people I wish I had some time with if she could spare a few minutes.
The person a family most needs beside them may not be the person most clinically involved in the baby's case. If possible, having providers identify who was already a trusted contact for continuity could make a big difference in crisis.
In our case, I’m grateful that the lactation consultant was in the NICU that day, saw what was happening, and reached out to our midwife because she happened to know her. As soon as my midwife arrived, it felt grounding to have someone in the room that knew us and our pregnancy a bit more intimately.
At the same time, I think a crisis can create its own kind of intimacy, even in brief interactions. Connection can form quickly through small moments of acknowledgement and presence. During Nathan’s first days in the NICU, we were so happy when nurses knew his name and referred to us as his parents. After he died, many of the people around us were unfamiliar, which I understand may reasonably reflect different roles, staffing, and who was available at the time. Still, the shift felt noticeable, and a brief introduction to a new person, or an explanation of their role from one familiar face, might have made that transition feel a little gentler.
Making and keeping memories
Other than sympathy cards, a lot of the only tangible things we have of Nathan are medical things, so I treasure the memory box that we received from the NICU. My midwife told me that the memory boxes were an initiative from a NICU mom in the past whose baby died, and I’m forever grateful that she advocated to make something like this part of the experience for families who came after hers.
Healthcare providers may see a blanket, identification band, blood pressure cuff, or hat as one of many items used during care. For a parent, it may later become one of the few physical objects they can have that their baby actually wore or touched.
I remember being relieved when I asked for the handwritten “Nathan” tag that someone had printed and coloured in for him in the NICU, and they said, “Of course!” I appreciated that certainty and that I didn’t need to explain why something that felt little was meaningful to have. I did not have to justify why I wanted things that were around Nathan or remember which things I wanted. They prepared the memory box with items from his area and the quilt over his incubator without me having to ask further.
They also did his handprints and footprints. They had offered that I could help, but I could not bear to do it. A couple prints came out a bit smudged, and, in a tiny moment of feeling like myself in a horrible situation, I asked if they could redo those ones. They did. It was unspoken and understood why I needed them to be as close to perfect as possible. My friends have since joked that it’s “on brand” for me that I said something, and I’m glad I did.
I’m also grateful that we were offered that someone on the unit could come in and take photos with a professional camera so that we wouldn’t have to take them on our iPhones. It was a complicated experience: I am grateful that we have the photos, but I remember how awkward and profoundly sad the experience felt.
We had said no to being in the photos, so she took Nathan and posed him into different positions. Even if I was not in any position to talk, I kind of wish that the photographer had tried, and then taken the social cue if her talking wasn’t received well or I was unresponsive. Maybe that she could have engaged us by asking who we thought he looked like, checking whether there were particular photographs we wanted, or just asking whether we felt like talking while she worked.
Here she was, taking pictures of my baby after he had died, in silence. I wish we could have talked about Nathan. All I remember her saying directly to me was asking if he was my first baby. I mumbled yes, and then there was no follow up. A few times she talked to herself through the process, but I wish it could have been more of a shared moment. Those photos are some of the only images we have of Nathan as our perfect little baby, without wires or medical equipment around him.
I can imagine the different reactions of parents who are silent, angry, stunned, or completely unable to engage, but preference for silence can be checked rather than assumed. Looking back, I would have wanted the opportunity to talk, even a little. Days and hours earlier, people had been talking about how cute Nathan was, how strong he was, and what the plan was for his care. After he died, it felt like people weren’t talking to us or about our baby anymore.
Grief can make other people understandably afraid of saying the wrong thing. What had happened to us was unspeakably painful, but I did not want that pain to mean we couldn’t even try to talk about Nathan.
Leaving the NICU
I didn’t realize how long we were in that side room of the NICU. I can’t remember if I overheard it, or just felt intuitively that it would be time for a shift change soon. We thankfully didn’t feel rushed by anyone, and we knew when it was the right time to say goodbye and leave.
It was only later that I learned about a CuddleCot. I don’t know if that was available and I don’t know if we would have stayed longer, but I hope that if that option is available in the hospital to other parents, they are informed and offered it. I cherished the time we had with Nathan after his death, and I imagine many parents—whether their baby dies before, during, or after birth—will value understanding how to spend the most time together with their baby.
I remember wishing that the doctor had come back into our room sometime after Nathan died, outside of the formal process of pronouncing his death. I think I wanted another human interaction with the person who had been involved in the most consequential conversation of our lives. I know this may not have been possible because he was busy, but I wanted to say thank you and goodbye.
Leaving felt surreal. We were initially going to leave through a side exit so that we would not have to walk through the NICU again. But our belongings were at the front, so we had to go back through the main door. I remember walking through and deliberately trying not to make eye contact with the other parents or look at their living babies.
I could see some staff looking at us. Most people averted their eyes.
I saw the person who had earlier tried to usher me out of the main NICU room and into the private side room when Nathan was coding and I was visibly distressed. At that moment, I told her I wanted to stay with my baby. When we passed by each other, she did not say anything. Neither did I.
I was numb, and I kept walking.
I remember that we finally saw the main nurse who had been taking care of him as we left. She was almost smiling while expressing her condolences. I don’t know how my brain pulled a pop culture reference to the forefront at that moment, but I remember thinking of Claire Dunphy from Modern Family, whose character smiled when she had to share bad news in an episode. It actually helped me consider the nurse’s sad smile as possible awkwardness, nervousness, or an attempt at warmth. I remember mumbling, “Thank you for everything” to her, hoping she could feel my genuineness, even though I was feeling so empty.
I do not know what anyone should have said to us as we left the NICU. I am not sure I would have been able to respond. But I remember it mostly being silent.
As I reflect now, I realize how closely I was reading every face around me, searching for some connection and recognition of the horror we went through. We left the NICU.
Continuing care after loss
Over the next few weeks, care continued beyond the NICU for my own post-op and postpartum experience. Our midwives visited us at home and helped communicate information between providers. My original family doctor had not initially known that Nathan had died until our midwives told her. I was also in the process of switching to a new doctor, which meant explaining that the intake appointment I had expected to use to discuss my pregnancy and my future baby's care was now taking place after an early birth and the death of my son.
My new doctor responded with enormous kindness. She offered to begin with a phone appointment rather than asking me to come into the office before I felt ready. Later, when I had a follow-up with the OB who performed my C-section, I remember calling beforehand and shakily asking whether she already knew that my baby had died. I had reached a point where I could not tell who knew and who did not, and the uncertainty itself became difficult.
When a provider already knows, I have found it helpful when they acknowledge the loss early. It removes the fear that I may have to unexpectedly explain it again. When they do not know, I recognize that there will inevitably be times when I need to tell the story. Either way, I now enter healthcare interactions with more caution than I did before.
One day, I hope to be pregnant again, and I know that pregnancy will bring its own layers of hope, fear, and tentativeness around my medical care. The compassion I have experienced from the providers who know our history is already helping that future feel possible.
Care after baby loss extends well beyond the unit where the baby dies. Every healthcare interaction afterward is another opportunity to meet a grieving parent where they are.
Finding connection
I found out about The Butterfly Support Network because there were a few items in the envelope and memory box with their logo. I remember emailing to ask how I could get involved, and I sent a message to Kim, Executive Director, saying that lighting the Butterfly Support Network candle regularly in my first month without Nathan became a ritual that I was so grateful for. We also planted the wildflower seeds provided in a pot in our garden, although given my track record with outdoor plants, I’m not so sure we’ll be seeing the butterflies they’re supposed to attract once they bloom.
I am grateful that organizations like Butterfly Support Network exist because families need different kinds of care at different stages and from different people. I also kept looking for something very particular: personal writing and a guided experience that felt like someone sitting beside me saying, "I know a version of this", separate from the late-night Reddit spiralling of my early grief days.
I started journalling extensively in my heartbreak after Nathan died. Over about a month, I began turning those reflections into writing that other grieving parents might recognize themselves in. I started a new platform: calmhearted.ca. My professional background in learning experience design and creating resources shaped the way I organized the platform, and I added my personal touches along the way. The colours on the website are from our baby shower and the main sans serif typeface is the same one used for our wedding. With so much love with nowhere to go, I poured myself into building the website over three weeks, and made it public on Nathan’s four-month birthday.
Calm-hearted emerged because grief creates many different needs, and I realized there was room for one more kind of support: a personal, lived-experience space alongside the clinical and charitable resources already available. That’s why I value the opportunity to share this reflection through The Butterfly Support Network, along with my writing on the Calm-hearted platform.
Lived experience cannot tell healthcare providers exactly what every grieving parent will need. My experience is one experience. Another parent might have wanted to leave the room when I wanted to stay. They might have wanted every possible memory-making activity when I wanted time alone with Nathan and Jordan.
Nothing a healthcare provider could have said or done would have changed the fact that our son died. I understand now that when the medical outcome became the one everyone desperately hoped to avoid, care needed to evolve. Even once the medical team can no longer change the outcome, care is still needed:
There is a parent trying to understand what is happening.
There is a family making decisions they never imagined making.
There are memories being formed during hours that may later be replayed for years.
And there is a baby whose parents still want to parent them and remember forward in whatever ways they can.
I was a patient. I was recovering from birth. And through all of it, I was still a new mom—now learning how to be his mom while grieving him.
The lesson I carry forward is not that healthcare providers should know exactly what every grieving family needs, because every story of love and loss will be different. It’s that support can remain active, human, and explicit even when it feels like there is no “good enough” or “right" response. Care after baby loss needs to offer choices, explain what happens next, preserve continuity where possible, and keep recognizing the parenthood that remains.
Other reading:
Admin after Baby Loss writing from Calm-hearted
Postpartum without your Baby writing from Calm-hearted
Parenthood after Baby Loss writing from Calm-hearted on the Brood Blog
About the author: Jessica Gutierrez (she/her) is a Vancouver-area writer, learning and development professional, and founder of Calm-hearted, the personal pregnancy and infant loss support platform she created following the birth and death of her son in April 2026. Her writing explores remembrance, relationships, and the realities of returning to everyday life after profound loss. Through Calm-hearted, grieving parents can find curated resources, practical guidance for loved ones, and liaison support for their workplaces regarding communication and return-to-work situations. Visit the website and connect with Jess: calmhearted.ca
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