r/babyloss

TW: NICU, Graphic/ Raw emotion, compassionate release/ natural death

Hello comrades in coping -

I’m a mom coming up on 5 mos post the loss of our first and only daughter, Lily 🪷. She gave us 7 days 💔 Full term pregnancy, live birth, best doctors, delivery was hard on me but no concerns for her, and then BAM!

bilateral ischemic mca stroke - 85% of her brain, dead.

we don’t know exactly when or why it happened, and we never will.

but you can’t just look at a baby and know that. There was A LOT of diagnosing and testing in those 7 days. A lot of fighting for stability in the first 24 hours.

Her symptoms started in the post-partum room. Even in my haze of exhaustion/ epidural drugs and my bubble of joy, I remembered what time it was exactly each time I saw something strange. And then Id call the nurse, tell them the new thing and remind them of everything before, feel a little silly, settle. But I kept seeing things. Like the frequency was obvious to me. She kept holding her breath so I kept blowing up her nose, or she’d settle and be comfortable and then kinda startle/ twitch, the worst was her eyes 💔. I don’t have to describe it, but you can imagine how painful to see her eyes and know something was wrong. Soon enough the right nurse with the right background heard what I had to say, and Lily became VERY popular.

I hate sharing that but it feels important to share the signs for a stroke in infants. It’s not something you really think could happen - at least I didn’t. When I told the nurses about her symptoms I wasn’t thinking stroke - I was thinking “something’s wrong so I’m gonna tell you every little things until you get it”

And then the NICU.. fuck the NICU. Like thank you Children’s Hospital and your wonderful teams for doing literally everything possible to save my baby, but I hate that floor. The teams are great. One of the nurses who we became particularly attached to drove 3 states over just to attend Lily’s memorial ❤️But still, fuck the NICU and the waiting and seeing and the hoping and the loss. There was a clock in her room that was stuck ticking in one spot no matter what we did for 7 days, mocking us frozen in time. I took it home to smash and it magically worked. And that fucks with me a lot.

I have a lot of guilt around her “compassionate release” mostly because it didn’t feel that way. No amount of morphine, or holding, or anything felt like enough. There’s no way to tell how long someone will take once taken off the ventilator, but no expected a little less than 3 days. Lily is the first person I’ve known and been with as they died a natural death. It’s a harrowing and spiritual experience. She fought to give us every moment she had, and I’m grateful for them all.

Some were even, dare I say happy. Because she gave us so much time, we were able to step out of grief sometimes even just for a moment to tell her about her family or funny stories. Still though, I revisit the dreadful moments more than the lighter ones… I hear it in my sleep, and while I’m awake. And then I question the doctors and the scans and the machines and myself. “If she held on that long? Did I…?” And then I have to shut that down.

I started this post because I was gonna say something like, “I feel like I’m starting to really come back to present life, what do I do about that?” but I don’t think that’s true. Idk what this is. Thanks for reading my word vomit. Hopefully this was okay to share.

What would you do in this situation?

In January 2026, my husband and I welcomed our son at 26 weeks gestation via emergency c-section. He was our first baby after 9 years of trying to conceive, as both my husband and I struggle with fertility issues.

Everything happened extremely suddenly and traumatically. I became very unwell with sepsis, our son was critically ill at birth, and we were told he had severe neonatal sepsis and pulmonary hypertension. He lived for just under 6 hours before he died in our arms.

My mother-in-law was there at the hospital. She met him, held him while he was alive, and was present after he passed away.

At first, we thought she was supportive. But over the months since losing our son, we’ve started reflecting on a lot of the things she said and did, and honestly, it’s left both of us deeply disturbed.

For context: on the same day as our son’s funeral, my sister-in-law also lost a baby at 16 weeks gestation.

When my mother-in-law found out that my sister-in-law had been able to hold and meet her baby, she said: “Why would the hospital let her do that? Is it like when a puppy dies and you show it to the mum so they know it’s dead?”

She repeatedly referred to my sister-in-law’s baby as “not a real baby” and “just a foetus,” and said she didn’t understand why she would have PTSD, grief, or “aching arms.” When my sister-in-law arranged a funeral for her daughter, my mother-in-law called it “stupid” and questioned why anyone would have a funeral for a baby at that gestation.

She also has an issue with my sister-in-law talking to her living child about the baby they lost. Because of that, I can’t help but feel like she believes bereaved parents should eventually just stop talking about their babies altogether and pretend they never existed. It makes me genuinely worried that if we ever have future children, she would expect us to hide our son’s existence from them too, almost like he should be swept under the carpet and forgotten. This would absolutely never happen but she has made comments about my sister-in-law having a memorial shelf for her miscarried baby at her home, saying things like my sister-in-law is doing it for "attention".

What makes this harder is that she has also referred to our own son as a miscarriage, despite the fact he was born alive and died in our arms hours later.

At the hospital, literally while our son’s body was lying beside us in a cold cot only hours after he died, she started talking about us having a “rainbow baby.” I know some people mean well when they say things like that, but at that moment it felt incredibly insensitive and dismissive of the child we had just lost.

She has also compared the death of our son to an abortion she had when she was younger. For years she described it herself as an abortion because she didn’t want the baby, but after our son died she suddenly started referring to it as a miscarriage and using it as a comparison to our loss. I honestly find that deeply hurtful. Losing a baby who was wanted, carried, born alive, and died in your arms feels completely different to us.

My husband has been struggling severely since our son died. He has PTSD and nearly lost both his wife and child in the same day. Occupational health and counsellors have said he is not ready to return to work and is currently a risk to himself mentally, but my mother-in-law constantly pressures him to “just go back to work.”

Another thing that really upset me happened after I decided to start a small memorial business in our son’s memory. I create funeral stationery and memorial items for babies and children because I struggled to find anything suitable when planning my own son’s funeral. Part of the reason I do it is because I wanted something meaningful to come from his life, and I also donate toward baby loss charities that supported us.

After hearing this, my mother-in-law decided she wanted to start selling her own artwork at her local pub. She said she would put up a story about our son beside her paintings because “everyone loves a sob story.”

That comment honestly made me feel sick. It felt like she was trying to use our son’s death as a marketing strategy.

There have been lots of other comments too, including her trying to tell us that we “can’t” post about our son’s death on social media. We wouldn’t have posted it publicly anyway because we are very private people and rarely use social media, but the fact she thought she had the right to control how we grieve or speak about our own child felt incredibly invasive and upsetting.

At this point, both my husband and I are seriously considering distancing ourselves from her or removing her from our lives entirely. I think I just need validation from people outside the situation, especially other bereaved parents, because sometimes I feel like I’m going crazy hearing these things.

Would you consider this behaviour unacceptable? How would you handle this?

Yesterday my daughter would have been 2 months old. Today I had my 8 weeks pp appointment and I was really scared I would hear some bad news again. It was really difficult and emotional to walk through the same corridor where I last held my daughter in my arms, and sit in the same waiting room as during my pregnancy. During the appointment everything went as well as possible in this grim situation. I had a c section and the doctor said we could start TTC 6-12 months pp. But when I got home, I was struck by this really deep feeling of emptiness and sorrow. This was the last doctor's visit related to my first ever pregnancy and my daughter, and now I feel like this chapter of my life is over. Other people move forward with their lives and expect me to do the same. I can't imagine not TTC again, but also thinking about going through this again scares the living shit out of me. Idk if anyone can relate, but I just had to get these thoughts out of my head.

Hi, my nephew’s umbilical cord wrapped around his neck and he passed away. (He was the most precious baby I’ve ever seen, he had a head full of hair, and the most handsome face i ever seen Even though my little dude skin had started peeling)

Aside from him, I’m more worried about my sister. She has been in the hospital since Saturday, today is Wednesday and she hasn’t spoken a single word since the doctor told her he passed away, she hasn’t even cried, she just lays there.

Ive been there everyday asking and talking to the doctors for her, I’ve also been babysitting her 9 year old son, I’ve took a few of the things out of the nursery put them into storage and cleaned it up a bit (I left a few things for her to remove when she is ready) while she’s been in the hospital. She gets discharged later today, and I’m not sure if she should stay at her home alone with the child or what I should do.

I don’t have any kids, so I don’t know how she feels nor can I relate to her. My boss has given me a paternity leave after explaining my situation to him so I’m pretty available.

I just had my 20 weeks ultrasound today and found out our baby has passed away at 17-18 weeks they think. This would have been our 4th baby. I’m just in shock and devastated.

After years of infertility and IVF, my husband and I lost our daughter Frances at 23 weeks.
We had finally started allowing ourselves to believe things might work out. She was a euploid embryo, the pregnancy had been progressing well overall, and after prior losses we felt like we had finally made it to safer ground. We even had our anatomy scan shortly before she passed and while not every image was obtained, nothing major had been flagged.
Then suddenly there was no heartbeat.
I delivered her two weeks ago and I honestly still feel like I’m living in another reality. We are now waiting on autopsy, genetics, and more testing, but so far there are no clear answers. The uncertainty is brutal.
I think one of the hardest parts is that after infertility and prior miscarriage, I thought making it into the second trimester meant we were finally going to bring our baby home. I had finally let myself feel hopeful and attached in a different way.
Now I feel caught between worlds. Infertility was already isolating, but stillbirth feels isolating in an entirely different way.
I would really appreciate hearing from others who experienced later losses:
Did you ever get answers?
How did you survive the waiting and uncertainty?
Did you eventually find hope again, even if you never fully “moved on”?
Reading stories here has helped me feel less alone, so thank you for listening.

I am 10 weeks postpartum from my 4th daughter who was stillborn at 38 weeks 5 days. I’m struggling. I’ve lost my daughter, the life our family would have had with her, my perfect 2 boys - 2 girls family, my identity, my mental health. Some days are ok but others I am on a deep dive to understand what happened. I had a very normal pregnancy which I did 9 ultrasounds for (constantly nervous about my other kids bopping into my belly) my pregnancy felt normal other than being denied maternity insurance.

I am self employed and when I found out I was pregnant I did what I did with all three of my other healthy pregnancies, called my agent and said I needed to switch plans to one that covered maternity. That’s when a big problem happened, because I had a confirmed pregnancy it was a preexisting condition, because I don’t qualify for Medicaid I couldn’t apply into one of those programs, because it was July and I didn’t have a life qualifying event I couldn’t change insurance. I could change to marketplace at full price in November but I wouldn’t be covered until Jan 1, my daughter was due March 10. I called and asked so many OB’s if I could cash pay as the financials were not a problem it was simply the timing of insurance. No OB would take be on as cash pay due to the liability, even if it was only part of the pregnancy. At this point I was so frustrated with the whole system that I said screw it I never did anything at those OB appointments anyway and did things on my own. Blood pressure, urinalysis, blood tests, all of it on my own. I was so confident.

I went into a normal labor at 38 weeks, we rushed to the hospital and I was checked and brought to a delivery room. No one told me they couldn’t find a heartbeat. I pushed through no meds, just like I planned. They set her on my chest and went into to cut the cord, my husband said “don’t cut the cord!” And they responded “we have to” my daughter was pulled from me and worked on beside my bed. I remember feeling like this can’t be real, they’re going to work on her and she’s going to cry any second. This isn’t happening. This is not happening to her. After nearly an hour, they told us she was gone.

If you can imagine the guilt I felt that I had failed her, it was unimaginable. Days where I just screamed and cried but still had 3 kids to take care of. Thank god I have my husband and them or I really do not know I would have survived this.

2 weeks after her birth, funeral and the emotions in between, we found out she tested positive for Trisomy 21, Down’s syndrome. To say this has been another emotionally charged news is an understatement. Once again, I failed to protect her. How did I not know she needed more help.

Just needed to share my story as today was particularly hard.

Not at all what I was expecting to hear after 5 months of waiting . A perfectly healthy 18 month old girl . My daughter had a rough nights sleep the night before she passed. Couldn’t get settled and sounded congested. The evening before bed she started having a fever & look lethargic, at that time we just thought she was exhausted from the fever. We assumed the fever was coming from her impacted teeth. 😢. We could’ve never imagined it could be something worse. We gave her a safe recommended dose of children’s ibuprofen, she took a little nap and that seemed to help a bit before she ate her dinner and went to bed with me.

She then slept pretty rough like I mentioned before, but woke up in the morning acting like her normal giggly self, playing with her dad & I . She even ate most of her breakfast. It wasn’t until nap time. She started to act lethargic again, but no fever. I noticed one trickle of green snot in her nose, which was very unusual. I know that green usually equals infection. I don’t know how in the hell that didn’t prompt me to take her straight to the hospital. I feel horrible & like a loser & failure. I found her during her afternoon nap, she was face down & already gone 🫩.

We’ve been waiting five months to hear back from the medical examiner, and her cause of death has been listed as “ unexplained sudden death” . I don’t even know what to do with this information, if there are any parents that have any experience with this, can you please give me some advice? I’m also curious to hear any information you have found from your research. I’ve done my own research, and there seems to be some similarities with my daughter symptoms and other children her age who died, and it was classified as sudden unexpected death.

I feel like I owe it to my unborn child. I’m currently pregnant with to keep digging for answers. .

Nothing will replace him being here, but it feels like something has to change. I dont even feel like the same person anymore. I used to be happy being alone as a housewife. Things that used to make me happy feel more meaningless. Nothing will compare to holding him in our arms. And the only other thing that matters to me is deep relationships and love and nature.

Did you ever find a way to make a meaningful change in life or around you somehow or way to remember your child? I hate looking around and seeing things The same, it doesn't reflect how I feel, I am not the same. I feel lost on a path of who I was to someone new.

I went to the grocery store to get a few things. I checked out at the self check out, like always. I paid and the machine said "approved, remove your card." I removed my card, but the screen didn't change, didn't give me a receipt. The worker came over and fiddled with the machine. Ultimately she reset the machine by turning it off and then back on. My transaction was gone. She had to take my card to her computer to verify my purchace. I sat there for 20 minutes waiting for her to figure it out. At the end of it, she told me that I would have to re-scan my items and pay if I wanted to take the items. They had no record of my payment even though I had a charge at my bank. I complied, paid again, and ultimately the first charge did drop off.

While I was sitting waiting for her on her computer, I had started to tear up and by the time she came back I was full-on crying. Not sobbing or wailing, but noticeably crying with tears falling. She rang me up and scooted me out of there as quickly as she could.

The whole situation was something that wouldn't have bothered me at all in the past. Maybe I would have been slightly annoyed, but certainly not teary eyed over it. It has been almost 2 months since I lost my son and I know that my emotions are from that... but I don't know how. I wasn't thinking about him. Why did that little inconvenience make me cry? It is like I am always on the brink of tears at any moment and any tiny, unexpected thing can send me over. Yikes!

On the 5th of April I gave birth to my little Elodie at 38 weeks, she was born sleeping.

Today me and my husband had our first counselling session. Though I found it nice to just talk my feelings out loud, I'm unsure if I really need more sessions...

Did anyone else just go to one session? Or not seek counselling or seeing a psych at all?

I initially wanted to do this so I could work through the trauma and emotions, but I think I'll always be sad when I think about losing my baby and no amount of "talking it out" is going to make that sadness go away.

Of course I have days where I am okay, and then days where I cry, but that's just how grief works, no?

Trigger warning

I had one living child who I gained about 30lbs during that pregnancy and lost around 15-20 which I was happy with because I was pretty small anyway.

But then 6 months after his birth I was pregnant with the child I lost and although I gained only 1lb is 20 weeks I was pregnant, my stomach is sticking around.

I can’t get it to leave. I work out- albeit not consistently but there is always moments whether in walking or playing outside with my husband (literally we are two big kids) but somehow my stomach never leaves.

It’s a harsh reminder of the loss. In my mind if I can loss my stomach I can be that much better. I loss him in September. Some days are just hard I guess.

“god doesn’t make mistakes”

then stop telling me losing my baby was part of some beautiful plan because there is nothing beautiful about a mother leaving the hospital with empty arms
nothing peaceful about grief so heavy it changes you forever
nothing comforting about crying yourself to sleep while the rest of the world keeps moving like your child never existed

people love saying “everything happens for a reason” until the reason destroys someone’s life. until it steals their joy, their faith & the version of them that existed before

so no, hearing “god had another plan” does not help
it does not heal me
it does not make this pain easier to carry

because no matter how many times people say it, i will never believe my baby was supposed to die.

This is the exactly how I feel. After Mother’s Day, that is all I was hearing. It was my first Mother’s Day without my baby and I could stop crying. Everyone was very supportive and caring, but just to have multiple people tell me this I just got angry.

I hate feeling this way… I just have so much anger and I try my best to not take it out on others but THIS is the one thing that will make me lose my mind.

Hi all,

Anyone tried EMDR and found it helped with the coping?

I could use talking to someone who understands. I don’t know if I’m approaching anger, but I’m over talking to friends/family who can’t understand what I feel.

Please DM me anyone

I need advice, not judgment.

Since going back to work after losing my daughter, I’ve realized how many people in my life knew about her. I work remotely and have friends, clients and business partners all over the world, so now that I’m reconnecting with people again, everyone asks about my daughter. But it also happens in everyday life, at the gym, in the street, at doctors appointments, everywhere.

My daughter died on February 6th. She was 13 months old.

The problem is that I still can’t say those words out loud to most people.

So when people casually ask, “How’s your daughter?”, I often just say:
“She’s fine,” or “She’s at home.”

And afterwards I feel awful for lying.

But saying “she died” to someone I’m not emotionally close to feels almost impossible. I feel like I would completely break down every single time, especially because most people are asking casually and aren’t expecting an answer like that.

I honestly don’t know if this is a normal grief response or if I’m handling this badly. Part of me feels guilty, but another part of me feels like I’m just trying to survive these conversations without collapsing.

Did anyone else experience this after losing a child? How did you deal with everyday conversations when the outside world kept acting normal while your whole world had fallen apart?

He died this past Christmas. We held the funeral in January. Today we entombed his little urn in the new family grave. We had to wait until we had arranged for a grave site and for his cremation so we decided to just wait until spring when it would be beautiful outside, and beautiful it was. There were these little flowers everywhere that looked like someone had sprinkled cotton on the beautiful landscape. It rained the perfect amount to be sad and beautiful but not inconvenient. We had friends and family there. We placed flowers. I sang 'We'll meet again' by Vera Lynn as we took turns scooping on dirt; the same song I sang for him as they took him off life support, as I placed him in his coffin, and that we all sang together at his funeral. It was beautiful.

But it was so hard to let go of his urn.

It's the only time we got to see his urn after he was taken for cremation following the funeral. It weighed so little. I just held it close and cried and thought I could never let go. In a way it was worse than putting him in his coffin because now I truly would never hold him again. This was it. His little life was at it endpoint. And I have to keep going.

We'll meet again some sunny day, my sweet little Rune. Mommy will love you every day until then, and beyond.

6 months ago today, my whole life came crashing down.

We found out our twins Kai & Lennon no longer had heartbeats at 15+3. On a random Wednesday in November. What was supposed to be any other day and an average every 2 week scan, turned into my absolute nightmare. I will never forget the sounds that came out of my husband as he sobbed. The long nearly 2 hour drive back to our local hospital to head to the labour and delivery unit. The faces of my nurses and the great care they took of me. Birthing my precious babies, only hearing silence. Holding them in my arms and telling them how much mommy loved them and that I am sorry they couldn’t stay.

Their birth was traumatic because it started and ended in death, but it was also so beautiful because it was their birth.

A lot has changed in 6 months, but I miss them everyday. I wish they were here with me. At a minimum if they stayed in as long as they could they would be 7 weeks today. My life should be chaos learning how to be a mom to 2 newborn identical twins. But instead they are dancing in the sky looking after me and their dad, and sending us signs when we need them most.

I hope there is an alternate universe where right now I’m sitting on my couch watching them sleep soundly & going to bed knowing I will have a sleepless night ahead.

To my babies Kai and Lennon, our time together was far too short, I wish I had an eternity with you. I love you, I miss you, and I wish you were here. 🦋💖🦋

Im 4 days postpartum of a 41 week stillbirth. One thing I wasn't prepared for was that my older child's crying would trigger milk leaking. It also triggers such a deep sadness inside of me. The milk should be for his baby brother, not just staining my shirts. I wish it would dry up already.

Saw a pregnancy announcement on my feed today. My husband’s friend posted his wife is 6 weeks pregnant and due in December.

Man… my stomach DROPPED. Like instantly.
And before anyone starts … no, I’m not a bitter hater 😭 I’m usually genuinely happy for people when they announce pregnancies. But my brain immediately went:”Wait. We were thinking we would have a baby for this year’s Christmas.”
That realization hit me like a brick all over again…

I lost my first pregnancy, so with my second, I was traumatized BAD. Every ultrasound felt like a reality show elimination round 😭 like “Okay… are we making it to next week or not?” I wouldn’t even look at the screen. I’d just lay there squeezing my husband’s hand waiting for the doctor to basically hand out the final rose to announce if we were safe for another round.

One appointment, the doctor couldn’t find the heartbeat right away and his face changed for like 2 seconds. Y’ALL. I almost ascended. Then he found it and I wanted to cry & fight everyone in the room at the same time.

So this last pregnancy was the FIRST time I told myself…
“Okay. Calm down. Enjoy it. You deserve to be excited too.”

I downloaded The Bump app. I was reading my fruit size updates every week & telling my hubby the milestones
“MY BABY IS A BLUEBERRY TODAY.”

I started imagining holidays, little outfits, all of it. I finally stopped surviving pregnancy and actually started enjoying it.

Then boom. Lost my baby.

And the sick part? I still have the app notifications on my phone. Why? Girl I DON’T KNOW. I can barely open them but I also can’t turn them off. Is it a toxic trait?! I don’t know if it’s good or not.

Pregnancy after loss really changes your brain though. People don’t talk about that enough. happiness feels scary. Some days I’m okay. Other days Instagram hands me an emotional uppercut at 1:20 PM while I’m just trying to scroll in peace 😭