Hi All -- I'm looking for someone to connect with who has experienced neonatal loss. I lost my first child and son, Charlie, five months ago. He was born full-term and there were a series of complications during delivery that resulted in HIE and severe, global brain damage: shoulder dystocia, nuchal cord x3,lack of oxygen to brain and the need for resuscitation after an emergency c section. At six days of life, doctors recommended that we withdraw care as there was zero brain activity. Suffice it to say, that was the absolute worst day of my life.

One of the hardest parts of grieving has been a feeling of total isolation. While I know I'm not alone in this experience, I do not know anyone personally who has experienced this type of crushing, incomprehensible loss. It would be so helpful to be able to talk to someone who just 'gets it'. I am seeing a therapist which helps tremendously, and I know there are support groups for all types of loss ... however, I am really searching for someone who's experienced neonatal loss with whom I can connect with. The groups that combine miscarriage, stillbirth, etc., into one loss category feel so unfair to me. It sucks that I don't have a 'box to check' so to speak, because it makes it harder to find parents to connect with. Pregnancy and infant loss are NOT the same. That doesn't mean one is 'worse' or 'harder' than the other, but there are inherent differences and it frustrates the hell out of me that all support groups seem to view it as one in the same.

Appreciate any help and sending hugs.

Dear Charlie's mom, I'm so sorry for your loss. My baby Miriam was also a neonatal loss after a medical emergency. If you'd like to talk more I'm here/ Email/ WhatsApp.

And sending a hug

Hi Charlie's Mom,

I have thought about this subject so much. I delivered my baby at 14 weeks, and it was the worst thing I ever experienced in my life. I still get flashbacks of the delivery that haunt me when I try to go to sleep at night. My mom, though trying to be helpful, often tried to lump me with someone in our family who experienced a miscarriage, but it was much, much different from mine. I felt irritated and discarded her comment because I felt she just didn't get that it's not that EASY and just because someone experienced a miscarriage, doesn't mean it's the same.

Every single one of us have one thing in common. Loss. However, that loss is all so different. Like my fave quote "just because the person next to you is in a full body cast, doesn't mean your broken arm hurts any less."

I think you're a strong person and I hope that you can find someone who you can connect with. Someone who can check that same box as you. This is a wonderful platform to communicate with other grieving women.

Sending virtual hugs,

Ash

Devorah and Ash,
Thanks for your reply. I'm sorry the loss of our children is what brings us together -- it sucks, big time. I delivered Charlie at 41 weeks; I spent months agonizing over so many details, preparing and doing everything 'right' and the loss is soul-crushing. So many things that will forever remain in my imagination. I never got to see his eyes, or hear him cry, or experience any of the 'joy' that we anticipate in those first few moments. The first time I held him was at 4 days of life, because he was transferred to another hospital with a higher level NICU.

I feel robbed of all that first-time bliss. And, it's EXHAUSTING to defend and explain grief to others who can't personally relate. There are so many times friends ask how I'm doing, and I feel the need to be really raw and open with them about my pain ... yet the responses often feel like they could be copied and pasted to anyone, facing any type of death. I want to know that my friends and family are mad, sad and upset with me. I want curse words, capital letters and exclamation marks, not platitudes that could just as easily apply if it were my grandparent who died.

After opening up to one of my dear friends recently, her response was: "I love you so much and I'm so sorry you have to go through this." I wanted to reply and say "DO YOU KNOW WHAT HAPPENED?? MY SON DIED!" This is crushing, gutting, loss. There are days where I feel like I'll tell anyone who will listen ... the grocery store clerk, an online chat bot, any stranger who will listen. Times when I want to wear a pin that says 'My son just died' in public.

It's hard not to feel jaded after experiencing a tragedy like this. I recently returned to work and it often feels meaningless. When a new team member joined and were asked to introduce ourselves on the line, one by one, people shared details of how many children they have, spouses and partners, etc. It sent me spiraling. Looking back, I should have shared the brutal truth: I have a son, and he died. But as you may be able to relate, it's not that simple.

Charlie's Mom,

I understand the anger you felt. I felt that, too. My loss came as a complete shock. I had been to my dr 11 days prior to the loss and I was told everything was fine. I saw my baby on the ultrasound, her their healthy heartbeat and I had finally let myself begin to feel joy and excitment; things I'd be preventing myself from feeling for weeks because I was so afraid of miscarriage. I had had one with my first pregnancy and then a second one with the second - it was a twin pregnancy. I remember taking a photo of the ultrasound and sending it to my husband. He felt the same grappling fear and I wanted to send it to him as a relief for us both.

11 days later, I woke up to cramping. I called my dr so many times and they brushed it off. Said it was normal. I was laying on my bed and the next thing I know, my water broke. I rushed to my dr office - by then I was bleeding. I was so so angry at life, at God, at my dr...at anyone and everyone. Delivering my baby will be something I'll never forget. I had to have an emergency d&c after and the entire experience was something nightmares are made of.

My dr told me she believed that the sac of twin a (who passed away several weeks before) caused me to go into pre-term labor. I didn't understand. I was so angry and so sad. I spent days...weeks... wondering if there was something that could have been done to prevent the loss of my baby.

I am still angry sometimes. I tried really hard to surround myself with people who love me or focus on things I'm excited about. That's all you can do, and even if you they don't understand your loss, talk to them. Say the things you feel. Open up to the checkout lady or a random stranger passing you by. You never know who will understand or maybe they went through baby loss too.

I don't have all the answers. None of us do. I wish our pain could be tucked safely into little boxes. There is no such thing as normal for us anymore after loss and the best that we can do is find a new way to be ourselves. You've changed in a million ways.

Look up Kameron and Stefanie on YouTube. I think you might like the community there. I've recommended her channel before to others on this platform and I think she puts up content we can all relate to.

Feel free to message me here anytime. I'm always happy to "listen".

Ash

I think the anger we feel is often soul crushing. My daughter died at 37 weeks and in the beginning people would say things like “I also had a miscarriage” and I wanted to punch them in the face. But I think that was coming from a place of being so pissed at the world, the universe that there was and sometimes is still a need for me to feel like I’ve suffered more intensely than others. I really love what Ash said about the broken arm. That makes so much sense. It helps for me to remember that I’m general our culture sucks when it comes to dealing w loss and grief. People feel badly but they say stupid crap bc they don’t know what to say or do. In the month or two after my daughter died I got really angry w close friends who were not doing or saying what I wanted them to or expected them to. I think I’m retrospect some of that was displaced anger. But who knows? Connection and support from others who have lived similar experiences to me has been the most comforting thing. I hope you can connect w others who you find that sense of ease and “no need to explain” with. Devorah and I have become quite close and her experience is so similar to yours. I know she would be happy to connect and she’s such a wonderful and loving person. Sending love and holding your family in my heart. Xx.

Ps- sorry for all of the typos! I’m typing w one hand on my phone :)

Thanks Meg, you've been a great friend and help to me.
Charlie's Mom, sorry it took a while to respond again, it's hard to revisit those NICU days. And people really don't understand, mostly because they haven't gone through it, didn't see my baby, don't think of my baby Miriam as a person.
It hurts so much that our babies were robbed from life. If only they were born/ taken out a day earlier- things would've been different.
I held Miriam as she died and that was so awful. The few days she was alive (also an oxygen issue) and was cooled, we didn't know what would be. And as the hours moved nothing looked good. The milk I pumped for her, the love to her. It all hurts, and it's all real. I planned, I hoped, I got her things ready. She was very much alive to me. And she's my baby, my child who died. And Charlie is your baby, your child who died.
I'm so sorry he died.
Reading and writing here on Glow, and making friends (through Glow) is really helpful to me. Here people understand and get it and honor my baby.

Charlie's Mom,

I hear you. My first baby died at 41 weeks during an unexpected tragedy in labor (after an otherwise uncomplicated pregnancy). I am sure there are some differences in our stories. However, I also hear you when you mention how far along you were, how you were full-term, etc., and how hurtful and infuriating it is when that level of loss is lumped in with *any* type of pregnancy loss. I've felt the same way.

My loss was in 2016. I used to be a regular contributor/writer here at Glow, and now I just poke in from time and time. Yours is a story that caught my eye, and I wanted to offer to connect separately if you were interested. I've chatted with many mothers over the years over email and/or texting and would be glad to do so with you also. It nearly killed me to know that not only was I so far along in my pregnancy, but I could've been induced multiple times before I finally went into labor on my own... I was overdue and just waiting around. There was literally nothing left to do, whether in the pregnancy itself or the nursery, etc.

I have so much more I could say, but I did notice/hear in your writing the fury over being compared to or connected with people who, although well-meaning, did not have as similar a loss as yours. Mine also has some differences from yours, but we have in common the 41 weeks, tragedy during labor/delivery, nuchal cord, oxygen issue, etc. I did not, however, have the NICU days you mentioned, and if that's too much of a differentiator in our stories, I seriously wholeheartedly understand (as I too have things in others' stories where, un-lovely as it may be to admit, I immediately think, "Ok, no, sorry, you won't be able to get this"). But if you would like to connect, just reply back on here (I think it will ping my email when there's a follow-up comment to my message here) and let me know how you'd like to be in touch. I'd be glad to email you.

Much love to you and to your Charlie,
Cameron

Meg, I laughed out loud at "I wanted to punch them in the face." Don't you wonder sometimes what people would do if you really acted on impulse like that? Said what was really on your mind? I often recognize the difficult position our support people are in. If you say nothing, it hurts. If you say the wrong thing, it hurts. At the same time, I don't think it's *that* hard. If you don't know what to say, say that. Send an emoji. Almost anything is better than the pain that is heard in silence.

Side note: I don't think I knew silence until I lost Charlie. The silence becomes so LOUD when you expected it to be filled with cries, laughs, babbles.

Can I share something? My SIL has never acknowledged Charlie's life or death. Wow, that one hurts. She didn't reach out while I was in the hospital, during the long days in the NICU, or in any of the days or months that have passed since. She has three young kids of her own. It's not that I *need* her support, but when your own family member seemingly can't be bothered to acknowledge the loss and hurt of losing my son -- her nephew -- that's something I just can't wrap my head around.

Devorah, thank you for offering your solidarity and sharing a little about Miriam. I'd love to stay connected and continue to share stories and support if it's something you're up for.

Cameron, I'm glad you reached out. I've read so much of your writing. It's beautiful. "The aftershock" sums up so much of what I'm feeling lately; I wrote down many lines from that piece. It's hard to find the right words to describe how I'm feeling most days, which is why I've found it so helpful to read others' accounts of loss ... it really helps me to understand and articulate what it's like when the waves get so big that you're barely up for air. It would be great to keep in touch and talk more.

Thanks to you all for reaching out and sharing. It's comforting to know I'm not alone. Validating. In a strange way, leaves me feeling hopeful. This is hard and I can get through it. My email is katwell10@gmail.com.

Hugs and courage.

Charlie’s mom- I had the exact same situation w my SIL!! She refused to look at a picture of my daughter. It’s a hurt I can never get over.

Charlie's mom, I lost my infant son at 3 months old after 2.5 months in the PICU with circumstances that seem similar to your experience. He got sick at day 13 of life at home after what seemed like an uncomplicated pregnancy. We (my husband and i) watched him suffer in the PICU with one complication after another helplessly as hope kept slipping away from us over an excruciating 2.5 months. I relate to SO many things that you've said and have felt so incredibly alone in my thoughts and feelings. I too wondered why pregnancy and infant loss are lumped into one box and I also feel like while they are both devastating they are different. We (my husband and i) have supportive friends and family but it is difficult for them to understand what I truly feel. When they say well meaning but seemingly meaningless to me, I want to scream, but I've been trying to remember that they are also dealing with their grief of the loss in their own way. My strategy now, to keep my sanity in check is to just avoid them so I don't have to push through their kindness, and repay it with misplaced anger. Thank you for sharing. I have not found a therapist that I connected with and hate feeling so alone.

Hi L -- Thanks for reaching out and sharing. The PICU/NICU is such a horrible place to have memories of, I'm sorry we have that in common. I can relate to what you said about not wanting to share with friends or family because they don't understand -- it's a strategy that I've also resorted to. I found myself sharing a lot more in the early days, because I thought it would help others understand the constant pain. Yet, their responses were so invalidating that it infuriated me that I had spent so much emotion and effort into sharing and received such a seemingly platonic response.

What is your son's name?

xx you're not alone <3

I'm sorry i haven't responded. I'm not able to bring myself to write his name out here today. I've just been sitting here staring at the screen.

Charlie's Mom,
I lost my son Jack in October 2021 after 29 days in the PICU. I delivered him at full term after an uncomplicated pregnancy. He was born with a congential heart defect and died from complications after surgery. He was my first child. 9 months in and so many of my friends have recently had babies. One of them recently sent me a pregnancy loss keepsake and I was so angered and upset by it. How could she not understand that I lost my month old son, not a pregnancy and that I don't need a trinket, I need a friend? I never said anything because even the idea of being confrontational was too exhausting and I hate that it is our burden to educate those around us. Anyways please reach out if you want to connect. I do understand.

Hi Danielle,
Thanks for sharing you and Jack's story. When is Jack's birthday? Charlie was born on October 2 (we share a birthday -- talk about poetic). I struggle so much with anger and feeling the need to constantly defend and explain grief .... like you said, someone who understands that I don't need a trinket, but someone to ask me how I am doing and sit with me in the uncomfortable feelings of grief.

I can also relate to having friends who have had children or who have become pregnant since Charlie died. Some with their second or third kids. It feels so unfair. Especially the "oopsies". I'm not ignorant to the fact that unplanned pregnancies happen often, but the announcement feels so much more unfair when I feel like I must be so keenly aware of NOT getting pregnant until XX time has passed (according to my doctor). And, we spent so much time planning for Charlie, doing everything "right" and we couldn't even have one child while others so easily have 2, 3, more?

It's heavy. I'd be happy to connect more and learn more about sweet Jack. Feel free to reach out if you're up for it. My email is listed earlier on in the thread.

If this thread is still active — and Charlie’s mom, if you are still open to talking more — I lost my daughter from HIE after a totally normal, full-term pregnancy. She was in the NICU on a cooling bed for about a day, and after consulting our doctors my husband and I decided to remove her from life support. She died in our arms several hours later. The trauma and sadness from a labor gone suddenly awry, the death of a much-loved and much-hoped for child, and the trauma of the time in the NICU and ending her life support are both still fresh for my husband and me.

So much of what you wrote, Charlie’s mom — about not being able to see Charlie’s eyes, or hear his cries — resonated with me. I am so sorry that he isn’t here with you. I would be happy to talk more if you think it would be helpful!