# Anyone Out There with Full-Term Loss, but not Stillbirth?



## ekandrmkb (Mar 1, 2011)

Hi there - I'm new to this board, only started posting/reading recently...I'm so sorry to hear of everyone's losses, and so amazed by everyone's strength at the same time...

I am feeling like my story is really unique in this day and age, and I wanted to find out if there was anyone out there who has gone through the same experience, because I'm feeling kind of alone. I truly believe we all share the same grief, but the specifics of what happened to me seems to be something not many people write about, or have written books about, or anything - at least, I haven't found man. Not to discount anyone else's experience at all - but I feel like what happened with us is not a stillbirth and not a live birth that ended in tragedy either...

Basically, about a month ago, we lost our son Rex during labor (full term). Everything was going well, up to the VERY last minute - and then he came out with no heartbeat - they couldn't bring him back. We're still waiting to see if they can figure out why...reports aren't back for at least another month - and we're getting genetic testing as well. Preliminary reports show nothing at all wrong with him, so they REALLY have no clue. We were at one of the best hospitals in the country, and I fully trust these doctors; so I feel like this was some really horrible lottery we "won". We were not at all prepared for this result, the staff was as shell-shocked as we were, and technically it's been called a "fetal death" since he never took a breath outside the womb on his own. But, it wasn't a stillbirth, and it wasn't post-birth - it was during birth and at the very last minute. He was fine until the last push, and then somehow something happened.

Has anyone else gone through something like this? I'm just trying to find out - our grief counselor (who's been counseling parents for years, and went through her own late-term stillbirth) has told me that in her experience, she honestly hasn't encountered anyone who has had this specific kind of story. So, I just wanted to ask.

Thinking of all of you, and so sorry for all of your losses as well.


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## Carolyn R (Mar 31, 2008)

So sorry about the loss of your son. What a tragic loss.

And unfortunately, I can relate entirely. Our daughter was lost at full-term, at the very end of labor. Labor progressed beautifully, heart beat was great, my midwives documented a strong, normal heartbeat as near as several minutes before crowning. But as she was born, she was limp and gray, no heartbeat, and never took a breath. As I'm sure you know, it was devastating and so shocking.

At first her autopsy findings were normal, but as they performed the microscopic exam, they found signs of infection in her lungs and placenta. The final cause of death was ruled congential pneumonia and chorioamnionitis. It was somewhat comforting to know a "reason", but it was still a rare occurence; no one could tell me WHY it happened.

Time has softened the pain, and we've gone on to have two healthy daughters, but there's not a day that goes by that we don't think of and yearn for our lost daughter.

And I agree with you, it's very hard to find similar stories. Most of what I've read over the years are either stillbirths, or cases where the baby was born alive and then died after.

Again, I am so sorry you're here, and I wish you much comfort and peace on your journey.


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## ekandrmkb (Mar 1, 2011)

Carolyn R - thanks so much for your reply - I am so so sorry to hear about your loss as well, it sounds very similar. In our case, they think something was off with his heart - we're getting genetic testing done for heart conductivity, as my now 3 year old had an irregular heart beat when I was in labor with him (luckily, it cleared up immediately post-birth), so they are wondering if there's a connection. We won't find out in a couple of months though. And it is true - although I find a lot of comfort in reading about full term loss and talking to people, it just seems a little different of a situation than a stillbirth, and I'm feeling a bit isolated. Maybe when (if) I get more answers, I'll find some more peace with it.

Congratulations, too, on your subsequent successful pregnancy! I'm already fixated on trying again (realizing it's way too soon, but I'm 39 and feel like I need to start planning), but I know that with a full-term loss like this, I'll be so anxious for the whole process (if we're so lucky to have things work). You are so brave to take the plunge not just once but twice. I know we'll always miss our second boy, too.


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## liz-hippymom (Jul 17, 2003)

i lost my daughter at birth also. i have a chorio infection which ed to a placental abruption. i am so so sorry for your loss.


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## ekandrmkb (Mar 1, 2011)

Liz - so very sorry to hear of your loss as well. I'm still waiting for the results of what happened; I know it won't change anything, but it's driving me crazy, not knowing yet. I'm thinking of all of you.


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## lil'mommakaye (Mar 26, 2008)

We lost our daughter durring an Emergency Csect. She had a HB that was normal but want moving as much as she normally did so i went in. everything was fine untill i sat back to read a magizene while on an NST. then her HB went haywire. they took me in for a Csect because i was FTerm and i felt her move as i was blacking out. when i woke up 4 hours later she was gone. I am a part of a few infant loss & stillbirth groups and have read MANY similar stories. We have no clue as to why she died. the Drs cant figure it out. I think i am having a harder time NOT knowing what happened. I am so sorry for your loss momma (((HUGS))) if you need to chat you can fine me on dailystrength.com same user name or my blog. I have not been writing lately because i am severly depressed, but i check in often. Mystarinheavenstellagrace.blogspot.com take care. this is a tough road. (((HUGS)))


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## ekandrmkb (Mar 1, 2011)

lil'mommakaye - I'm so very sorry - how traumatic an experience! I hope you hang in there and hopefully find peace, I'm looking for the same thing myself. I agree, not knowing is really hard. It's possible I may never know either, and I know that will be so hard to take if there's no answer. I am also starting to realize just how long and hard this road will be - it seems that the more time passes (it will be 5 weeks exactly tomorrow), the harder it's getting for me right now. I'm trying to focus on my 3-year-old right now to keep me together, but I still am really struggling. Just trying to focus on the day-to-day is hard, but what I'm trying to do. Take care. Hugs to you too.


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## sahmmie (Jan 13, 2008)

So sorry this happened to you. There are no words....

An acquaintance of mine lost twins this way. Everything was perfectly normal until the very, very end of labor. One twin died just before birth, the other was born alive but they lost him too. She didn't find out until weeks later what the cause was. They said it was a virus called CMV. I'd never heard of it and don't understand how it killed her two perfect babies. Supposedly it rarely kills fetuses or newborns, but it can cause a heart defects which can be fatal, and that's probably what happened to her twins.

I hope you get answers and that you will find peace when you at least know what happened. I'm so sorry.


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## namaste_mom (Oct 21, 2005)

I am so sorry for your loss.

You can find other ladies with similar stories at

glowinthewoods.com


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## Cheshire (Dec 14, 2004)

I'm so sorry - my heart breaks with yours. I do agree that this is more common than I ever believed. People just don't talk about it.

My son's labor seemed okay until close to the end. All heck broke loose and though he was alive when he was born he had lost most of his blood. After a short battle in the NICU he died in my arms 12 hours after his birth.

It was a complete shock. In fact, I know I was in shock for months. Over two years have passed and we've had a daughter since his death. I miss him more than ever. Time helps but this is one wound that will never "heal."

I do hope you find answers. Be gentle with your grief. You feel what you feel and there is no "right" way to get through the darkest days. Our first son was four when his brother died. It was hard to parent him but those times I forced myself to just play and not think about the grief did help my sanity. If there was ever a time when the phrase fake it till you make it made sense to me was during the first six months or so. I know there were a million times I wanted the world to stop spinning or I wanted to just melt into the ground. The grief is so primal, unlike any other loss.

I still have many mornings when I cry in the shower. I know I will carry this loss with me forever. I also know that I am tougher than I thought and more fragile than before. How those two go together I can't explain - it's just who I am now.

You will find your way - it sucks and you'll feel like kicking and screaming on this journey but you will find your new balance to learn how to live now.

My deepest condolences.


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## ekandrmkb (Mar 1, 2011)

sahmmie - I feel so sorry for your friend, to lose two so fast...breaks my heart. It seems like when people have been getting a diagnosis in cases like mine, they seem to be viral. Of course, I just have to wait. We received our DNA testing kits today, so we can send those in; and in 2 months (!) we'll find out if there was anything wrong genetically (they're looking for a particular heart issue called Long Q-T Interval).

namaste_mom - thanks so much. Also, thanks for the link - I went there, and will visit there again...it made me cry to hear all these stories, but I think it's just comforting somehow (like this board) to communicate with other people who have unfortunately gone through this.

And, Cheshire - thanks for sharing your story, I'm so so very sorry. I agree with so much of what you wrote - especially the "fake it till you make it" approach. I am trying to just spend time with my 3 year old guy, and that is helping (so much so, he's my world)...although I am definitely still picturing what could have been w/two boys 3 years apart, and what that would have been like. Also, he's been bringing things up - this morning, pushing on my (still blobby) stomach and saying he was poking the baby - that was hard. How did your 4 year old at the time handle the loss? We're trying to make sure our guy is handling things okay. And, yes, it sucks. I don't know how else to put it.


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## namaste_mom (Oct 21, 2005)

My children were 3, almost 4, and 5.5 when their sister died. We talked very openly about death, what it means, how it happens, what happens afterwards (we are comfortable saying that we are not sure because we have never died). For years, we had dolls that died and those that went to the funeral. The kids were just processing thei sister's death. We talked about her all of the time. With time, their questions have slowed but they feel as though their sister is always around and never leave her out of the family. I have one nephew who is particularly fixated on death and still wants to talk about my daughter's death and the death of his grandma. I just patiently answer the questions (it's hard not to cry when answering the questions) but i think it is ok to let them know you are sad.


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## Cheshire (Dec 14, 2004)

When our son died our 4 year old was devastated. I never thought a four year old could process that loss at the level he did but I've since learned it is very common. They get so much more than we give them credit for.

Watching him mourn his brother was one of the hardest parts of the loss. My DH and I were crushed for our oldest, as well.

We took him to a counselor that specialized in children and grief. I'm not sure how much good it did him but it did a world full for us. We were already very open with him about it. He got to spend time with his brother at the hospital after his brother died. He was able to hold him and he wanted to look at his feet and hands. We have pictures of all of us together. It was crushing and looking at the photos is very hard but I'm glad we have them.

The counselor told us our son would learn how to process death and his grief by watching how we handled it. She told us he would need to be assured he was safe and loved. She also said he would re-process the loss at every stage of his own mental development. She was so right. He can go months at a time now without mentioning his brother but then out of the blue he will start crying or want to talk about him again. He has a picture of his brother in his play area. He has a bazillion Legos and has minifigures representing all of his family members including his brother. It can be hard to hear him playing with them using his brother's name but in another way it is reassuring that life goes on and our son isn't forgotten.

She told us to not sugarcoat death, our baby wasn't "sleeping." We already knew that but she helped us with the words to use. We explained that he was dead because his heart stopped pumping and his lungs quit breathing. His brain stopped working. Our son needed us to explain that a lot as well.

He talked about it all a lot in the beginning. He wanted to know what would happen to him if we died. He had us explain over and over again about our wills and who we had selected as his guardian. We also explained that we expected to live to be very old but there are no guarantees - we just live as though we expect to get to that ripe old age. That reassurance without any promises that we wouldn't die meant a lot to him.

He still gets angry about it. He still misses his brother and we can tell that it is part of who he is now. He will always wonder what it would have been like. My grandparents lost their first child. My mom was their last child and even though she wasn't around when he died there is that hole in her family life. My son appreciated her talking to him about her grief and what it was like for her. None of his friends could relate to his personal loss so hearing it from her made him feel like he wasn't the only one.

I agree with Namaste_Mom, let him talk about it. Let him see your grief and see you grow through this. He will know that you are okay even with this grief. Also, you know your son, you know how much he can handle. My son saw my sadness and we talked about it but he didn't see the full extent of it. It would have overwhelmed and scared him.

And, last but not least, I'm amazed at our son's resilience. He has picked himself up and is moving forward loving life even with his deep grief. I've learned a lot by watching him. DH and I decided to charge full steam through this process, we feel what we feel and grieve how we need to. We made a conscious decision to not let this ruin us. We found joy even in the deepest sadness. We grabbed onto laughter when we felt it. We are each others safe place to land (even last night we had a long discussion about our children and our grief). We've made our family stronger and better even though our family will never be complete and we're making it okay because we can't fix it.

Hugs again.


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## mistymama (Oct 12, 2004)

I'm so very sorry for your loss. Unfortunately, you are not alone.

We lost our son Gavin at 10 weeks old - after a healthy, uneventful pregnancy, he was born with a severe brain malformation. He was in and out of the NICU during his life, but did spend some time at home. We ended up having to make the choice to allow him to pass on, due to his quality of life.

We are also going through genetics, but like your situation, they can not figure out what happened. All of Gavin's chromosomes were normal, so they lean towards infection that caused it, but I was healthy as could be my entire pregnancy and every test so far has come up negative. It's a big mystery and I think not having answers is sometimes the hardest part.

I just want you to know you are not alone, and I am so so sorry for your loss.


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## mistymama (Oct 12, 2004)

Reading the replies, I must chime in. My 8 year old has taken this every bit as hard and my husband and I have. He has written some heartbreaking papers at school about Gavin, and we talk about him often.

I have also taken ds to grief counseling, but he still has days where it "hits him" and he cries. I totally get it - I still have days where it hits me and I just need to sob and let it all out. I guess that's part of the process.

One thing we did that was hard, but healing - we bought a large picture frame and made a memorial for Gavin to hang in our home. We included our favorite pictures of him, his hand and footprints, the handout from his funeral service, etc. I just love it, and it was a nice project to make together.

Sometimes the hardest part of this is watching ds mourn. He'll ask me when he can have a sibling, when I can get pregnant again. He was so excited to be a big brother. It's hard because we don't know - we may never know and dh may never be ok witn trying again.

Hugs to everyone that has experienced this type of loss.


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## Fireflyforever (May 28, 2008)

I don't visit the board very often but I felt compelled to come here tonight - and your post struck a chord with me. I am so sorry that your precious little Rex died. Our third child, Emma, died during labour (the very final stages) in October 2008. I had been planning a home vbac and my labour was spontaneous, full term (on her due date even) , mostly straightforward and quick. We did transfer to the hospital during the second stage because my midwives thought she had turned into an awkward position - it wasn't an emergency and her HB was strong throughout the transfer and when we arrived at the hospital. I gave birth 20 minutes after arriving. I heard her HB for the last time 7 minutes before I pushed her into the world. Nobody expected her to be born floppy and not breathing. Nobody expected her to be dead. I thought intra-partum death was incredibly rare too, but I've met quite a few mothers who have gone through this, since.

My daughter's stillbirth certificate lists "hypoxia" as her cause of death. We didn't have a post-mortem or any testing because it seemed so apparent to us - and to our HCPs - that what happened was a labour accident - an occult cord compression. We think the cord became pinched between her shoulder and me as she was rotating ready to crown. Mostly, I think that's probably right. Sometimes I think there MUST be more to it - maybe she was compromised in some way that I didn't know about because I just can't make sense of a healthy, full term baby dying for "no reason".

My DS1 and my DD1 were 6 & 4 when Emma died ...and I'd echo an awful lot of what Cheshire said about her son's grieving process. They have grieved deeply and fully - and they continue to do so. They have both had grief support, offered to them through the school and we are very open and talk a lot about Emma. Her picture is up with theirs on the mantel and she is completely integrated into their lives. They did keep me going tremendously in those early days when I was just existing from minute to minute. In some respects, they taught me a lot about how to grieve. I tried to have no expectations about how it would be for them and I found their emotions were just utterly authentic - they could balance immense joy and deep, deep sadness. I hope it's okay to mention that we went on to have a son who is 14 months now. When I watch them with him, I realise how deep their grief still is - they are so tender and solicitous - and a little overprotective just like DH and I are.


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## namaste_mom (Oct 21, 2005)

Jill - nice to "see" you, that was very beautifully written.


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## ekandrmkb (Mar 1, 2011)

I've been away unfortunately...but your replies have all touched me so much. I'm so sorry for everyone's loss, did not know before my loss how often this can happen. It's just heartbreaking.

My little guy's 3rd birthday was 3 days after Rex's death, and due to his age, we haven't been able to always know what he's going through. The other day, he pushed on my (still a little there) belly bump and said he was "poking the baby". I had to remind him what happened. It's hard to know what he really understands; he was not at the hospital when everything happened, so never saw his little brother (neither did I, actually, which was my choice at the time - although my husband did and other members of my family; I knew it would emotionally destroy me, and I was virtually comatose with shock; I actually don't regret my decision, and we do have a photograph, which I will see when I am ready to)...so it's hard to know what impact this is having because he has had no direct contact with what happened. But, I do think he is working through it, and will just try to be receptive to it. Since his dad told him what happened, I also think he's actually more open to talking with him vs. me - when I've tried to get into details (when he brings his little brother up), he clams up and doesn't really open up to me. That's fine for now, but I hope he opens up or asks more questions as he gets older. I will also try not to "hide" the times when the grief really hits; I've been sort of doing that because I don't want to scare him, but I think I need to make sure we can share with him our feelings (at least a bit).

Also, Fireflyforever - Congrats on your 14 month old. I know we're not ready yet (only 6 weeks out from this), but I think if it's possible we want to TTC again...but I AM worried about if we are so lucky to conceive again, what my little guy will think. How will he handle the pregnancy? How did your little ones? I know I will personally be really anxious, but I have no idea what he will be feeling. Of course, not having to face that now, but I keep projecting ahead to the future because that's kind of how I'm handling this at the moment.

On another note - we finished the genetic testing kits and will know in 2 months (seems like a long time) about the results. The autopsy results will come sooner. I'm starting to wonder about an infection, as they have found some evidence of one in the placenta (got a sneak preview to some of the results from my doctor), but don't know if that could be a cause yet. Also, this could be just from the shock of everything, but for at least 3-4 weeks post-delivery, I was pretty sick with flu-like symptoms that eventually went away when I did a round of antibiotics...but the doctors couldn't tell what it was, exactly.

Thanks everyone, again, for sharing your stories with me - I hate that we are all having to go through such tragedy, but knowing that others have had to face this and not fallen apart is keeping me a little more together, you know?


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## Fireflyforever (May 28, 2008)

Quote:


> Originally Posted by *ekandrmkb*
> 
> Also, Fireflyforever - Congrats on your 14 month old. I know we're not ready yet (only 6 weeks out from this), but I think if it's possible we want to TTC again...but I AM worried about if we are so lucky to conceive again, what my little guy will think. How will he handle the pregnancy? How did your little ones? I know I will personally be really anxious, but I have no idea what he will be feeling. Of course, not having to face that now, but I keep projecting ahead to the future because that's kind of how I'm handling this at the moment.


My DH and I held Emma in our arms and told each other we would try again. We did wait until after January (so that we didn't have another October due date) and then until my cycle regulated. I have long cycles and we got pregnant in May - 7 months out. We didn't tell our children until I was 20 weeks gone and we had had our anomaly scan. We knew we could never promise them a living baby but we wanted to be able to say to them that there was a baby and, as far as the doctors could see, the baby looked well and healthy and would be carefully checked up on - and 4.5 months was slightly less of an eternity to wait than 9. They handled it really well - they were really pleased actually but very protective of me through the remainder of the pregnancy. When DS2 was born, DH went to pick them up from school a little early so as to avoid all the other parents and tell them that they had a brother. The first thing they asked was "Is he alive?"  But we expected that and were prepared for it. And that's the approach we have tried to take - they know there is nothing they can't ask about death and pregnancy and baby loss and they know we will answer as honestly as we can. Equally, they know we are fine if they DON'T want to talk too.

And D. - nice to "see" you again too.


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## mistymama (Oct 12, 2004)

Jill, I don't want to hyjack this thread, but I just want to say thank you for sharing your experience. It's very nice to hear from someone that is a bit farther down the road.


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## berkeleyp (Apr 22, 2004)

I rarely visit MDC anymore, especially not this forum but I felt compelled to do so today, perhaps because the 7 year anniversary of my first babe's intra-partum death is coming in a few weeks.

You are not alone and reading this post, there are actually more of us than I encountered here now than at the time of my loss. My daughter was born still completely unexpectedly. She had a good HB not 5 mins before she was delivered still pink but never able to take a breath. She was born at home and I have always blamed myself a little for that. I have never heard of this happening in a hospital before.

I am so sorry for your loss and know the pain you must be feeling. Caring for your other little one must be very hard and finding time to grieve difficult.

I have since had two children, one almost exactly one year after my loss.

Good luck to you as you move through the tunnel of grief. It does get better but many find the tunnel long before the light starts to shine through. May your journey bring you peace and healing!


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