Do you want to know?

Xath · February 2014

***Warning: Loss Mentioned***

I see a lot of threads on this forum that I'm hesitant to respond to; mostly those revolving around people's anxieties, fears, worries etc. Most recently this one, but there have been plenty of others. I certainly don't want to be the Debbie-downer on the board; that woman who regales all of the pregnant mothers with horror stories about the worst things that can happen. So my instinct has been (and is) to keep my experiences to myself in those situations.

However, after my daughter died, one of the things that I struggled with the most was that I was just never actively aware that late-term and neonatal loss still happened in countries with good medical care (like the US where I am). I had friends who's babies were born at 25 weeks and survived; friends who's children were born with terribly complicated complications and managed to push through it. I just didn't really think that terrible things could happen to babies after the magic viability milestone, not when we have amazing NICUs and health care professionals to care for them. And then it happened to me. My daughter was born at 35 weeks 6 days, scored well on her Apgars, and from all accounts had a greater than 99% chance of survival. And then she died. And since that happened, it seems I've encountered loss everywhere. People came out of the woodwork after she died to share their losses with me; but they had kept their children hidden in silence until I joined that terrible club. And that still seems terrifying to me; not only that so many children are being shuffled and hushed away so as not to make others uncomfortable, but also that we hide the worst that can happen specifically to "protect" the naive who are never unfortunate enough to experience it.

I don't want to make every thread into the horror story of "this is the worst thing that could happen." After all, since Eleanor had a greater than 99% chance of survival, it brings me comfort to think that there are many more people who were faced with late pre-term delivery who got to take their babies home. But at the same time, I don't want to perpetuate the myth that because we've reached some magical "V-day" that we and our babies are invincible from this point forward.

So this is rambly, but I guess I'd just like to know if people do want both sides of the story when they post about concerns, or if I should continue with abstaining, or perhaps create a thread (or just use this one) for people to share their stories of negative outcomes or loss for those who are feeling specifically curious and emotionally up to the read.

ABColeslaw · February 2014

I've struggled with how to respond to posts like that as well. It took me years, but I finally opened up about it through another forum and my own blog earlier this year. It still happens and there are more of us than people think. I try not to scare first time moms, but at the same time, like you said I think it is important for people to know that it could happen. Because it sidelines you and wrecks your life.

MrsT2008 · February 2014

I'm so so sorry for the loss of your Eleanor. I hate that you and others in your shoes feel like people wouldn't want to hear about it (though I understand your hesitation to post about it as well).

I personally wouldn't mind reading the bad with the good, I think I'd be less likely to want to read a post full of the sad stories - it would take too much out of me emotionally.

rainydayluck · February 2014

Sorry for your loss

It is scary and it happens. On my DD's BMB, a lady's water broke at like 39 weeks, she went in and found out the baby no longer had a heartbeat. I think about her all the time and how awful it must have been. I think if someone asks, your story can be shared if you want. You aren't running around looking for posts to tell people, KWIM? Like if someone is like, "Yay, viability week!" you probably wouldn't go in and tell your story there.

hfooter · February 2014

I'm sorry for your loss. And I appreciate it when people share their experience. Whether it be good or bad. No person should feel like they can't share what has happened to them. So thank you.

flutepharm87 · February 2014

I think it's important to see all sides and don't see a problem with sharing whatever you're uncomfortable sharing. When you're on the wrong side of the statistics, you're going to feel blindsided. And if you're afraid of being on the wrong side of the statistics, you're going to google what could go wrong. And Dr. Google is going to be much more blunt than hearing it from one of our own.

giggler25 · February 2014

hfooter said:

I'm sorry for your loss. And I appreciate it when people share their experience. Whether it be good or bad. No person should feel like they can't share what has happened to them. So thank you.

I too am very sorry to hear that you lost your Eleanor. I can only imagine how hard that must have been, and I completely see where you're coming from with this post and question. I agree with what PP said about appreciating people sharing their experiences. For me, I'd rather know all the real-life stories, the good with the bad, than have some fake rose-colored glasses on. Maybe it's my PGAL experience, but I don't think rose-colored glasses do anyone any good. Hugs to you!

CamrynnsMommy · February 2014

For me that's the beauty of these forums, real women sharing real experiences, supporting one another and giving advice. We share the good, the bad, and (unfortunately) the terrible.

Please share when you feel comfortable, when you think it's beneficial, etc.

I'm so sorry to all those who've experienced loss, no matter what stage of the game. So sorry for the loss of your sweet Eleanor @gertiebarden and @abcoleslaw for the loss of sweet Elisabeth. (Hugs)

laurblum · February 2014

So sorry for your loss. The thought that things like this can happen is horrifying, but I agree w/ PP that it's safe to share the stories. I know that by participating in a message board like this that I am going to hear a million different things and not all of them will be sunshine and rainbows. I am a FTM and have never dealt with the loss of my own child, but I have stood by a best friend who lost a daughter to a drunk driver. Though it's an entirely different situation, in the past two years since the accident, and being there for my friend have made me feel like I've witnessed one of the worst things that can happen to a parent. No one ever likes hearing of sadness like this, but these things happen and as hard as they are to talk about, I think it's even harder for the person going through it to feel like they shouldn't talk about it.

I can't believe that its even possible to lose a child that late in the game. Like I can't wrap my head around it. Same with SIDS. It's like, you have a healthy child with no logical reason for something like that to happen. And then it does and crushes your world. Like you said, with the NICU & every medical advantage you just go around believing it's impossible. I just don't understand. I'm so sorry that it happened to you. But I wish you all the happiness in the world as you anticipate this baby. I hope you never have to go through something so awful again in your life.

Miles2Go · February 2014

CamrynnsMommy said:
For me that's the beauty of these forums, real women sharing real experiences, supporting one another and giving advice. We share the good, the bad, and (unfortunately) the terrible.

Please share when you feel comfortable, when you think it's beneficial, etc.

I'm so sorry to all those who've experienced loss, no matter what stage of the game. So sorry for the loss of your sweet Eleanor @gertiebarden and @abcoleslaw for the loss of sweet Elisabeth. (Hugs)

I've been trying to figure out how to phrase my feelings on the topic. This is what I want to say, only CM said it way better than I could have.

I'm so deeply sorry for your loss. Thank you for sharing your story with us.

mileswithmyles · February 2014

I am so sorry for your loss. My loss was early, but I think it's important to share what you feel comfortable with.

I wish I was more open about my loss. It was really hard on me and very few people knew because it was so early. I feel like I would like to be more open about it in real life, but I struggle with it.

I wish people had been more open with me when I was TTC about their experiences. The rose colored glasses I had before my miscarriage were not helpful. I think knowledge is power.

LunaBug924 · February 2014

I wholeheartedly agree that you should share your experience with whomever you feel comfortable. While it may not always be easy for someone to hear, it is MUCH harder for you to tell it. And it may help another mama gain some knowledge and perspective, something that is severely lacking in our society in regards to pregnancy and child loss.

My losses were very early, but I have been very open about them. I kind of made it my mission to break the silence among my friends and family in hopes that my experience could help someone else down the line, or at the very least help people understand how to respond to someone who has suffered a loss.

I am so sorry for your loss, but thank you for sharing her story. ((((Hugs))))

ajsweeton · February 2014

I'm so sorry for the loss of Eleanor. I struggle as well with whether or not I should be a "debbie-downer," but at the same time I want so badly to raise awareness of PTL. I was always aware of it when I was pg the first time, but I trusted my drs to tell me if everything was ok. They let me down and I think that is the most important thing to share with other women. Know your own body and accept that you know it better than anyone else. If you think something is wrong make damn sure someone checks everything out before you accept that everything is ok. It's hard to know when to speak up and when to keep quiet. I always feel like I'm spreading anxiety with my story, but if it helps even one person its totally worth it. We shouldn't have to hide our babies or our stories.

ThereBeDragons · February 2014

ajsweeton said:

I'm so sorry for the loss of Eleanor. I struggle as well with whether or not I should be a "debbie-downer," but at the same time I want so badly to raise awareness of PTL. I was always aware of it when I was pg the first time, but I trusted my drs to tell me if everything was ok. They let me down and I think that is the most important thing to share with other women. Know your own body and accept that you know it better than anyone else. If you think something is wrong make damn sure someone checks everything out before you accept that everything is ok. It's hard to know when to speak up and when to keep quiet. I always feel like I'm spreading anxiety with my story, but if it helps even one person its totally worth it. We shouldn't have to hide our babies or our stories.

You said it so eloquently that I feel I have nothing to add.

I try to save the stories of my loss for times when I feel it can make a difference.

Christinaruth74 · February 2014

Hugs to you ladies for all of the sweet angels that were lost too soon.
As a FTM I try to keep everything in perspective... I know nothing is guaranteed, and that's a terrifying reality. It is almost encouraging to hear women share these kinds of stories as it sheds light on the hope of a future after loss. You are all incredibly brave and selfless

ksyknelvr73 · February 2014

LunaBug924 said:

I wholeheartedly agree that you should share your experience with whomever you feel comfortable. While it may not always be easy for someone to hear, it is MUCH harder for you to tell it. And it may help another mama gain some knowledge and perspective, something that is severely lacking in our society in regards to pregnancy and child loss.

My losses were very early, but I have been very open about them. I kind of made it my mission to break the silence among my friends and family in hopes that my experience could help someone else down the line, or at the very least help people understand how to respond to someone who has suffered a loss.

I am so sorry for your loss, but thank you for sharing her story. ((((Hugs))))

This exactly. It's a scary topic and it can be upsetting for some, but we have to know it's a possibility, and part of that is sharing your story. I was happy to reach "V-Day", but I am fully aware that it doesn't guarantee anything.

lauralou3x3 · February 2014

hfooter said:
I'm sorry for your loss. And I appreciate it when people share their experience. Whether it be good or bad. No person should feel like they can't share what has happened to them. So thank you.

This exactly.

Bayberry12 · February 2014

Thank you for bringing this up. Like you, I have kept pretty quiet when when people post their concerns or worries about symptoms or movement or whatever, because I don't want to be the one to scare the happy pregnant person with my horror story.

My daughter was still born at 39 weeks. Right at the end. VDay really means nothing to me. Of course I am hoping for a positive out come this time, but now I am very aware that things go wrong, a lot more then you would ever think. I have sat down in a room full of women in a large university hospital; educated women, healthy women, first time moms, third time moms, women who never missed a Drs appointment, and yet we all share the same story.

We are all very aware of SIDS and what we can try to do to prevent it, but what about all the other things that can go wrong? I don't mean you should dwell on the "what ifs" but I think it is very important to be aware. Most of us have the genetic screenings done to look for possible abnormalities, the counselors go over everything that these tests look for, all the things that could be wrong with our children, but how often has your Dr. mentioned the possibility a cord accident or stillbirth or placental abruption or accreta or PTL if you are not considered high risk? If your Dr. is anything like mine was, it will never be mentioned, even thought there are sings you can be on the look out for in a lot of cases.

So, I might be called an alarmist or paranoid or a downer by some on here because I jump at every little thing, but thats ok with me.

chknma · February 2014

I am also sorry for your loss and agree that honest sharing is what makes this community a useful resource.If I'm having a tough PGAL day, I have the ability to avoid posts that might be sensitive in nature. I have only had early losses, but do wish that these topics were spoken about more in the open.

IBackBevo · February 2014

Thank you for posting this! And I am so sorry for your loss.

On another topic, what has really bothered me a lot lately is that everyone acts like once you hit 24 weeks or so, it is NBD to have a baby at that time. It bothers me a little bit when someone posts "Oh, I knew this Mom who had her baby at 24 or 25 weeks and now two years later they are just fine and healthy." First, a baby who is born really early (like 24-26 weeks) and has no lasting delays is probably the exception rather than the rule. I know just in my circle of people I know, a person who had a 23-24 weeker and their child is deaf and blind and has other major issues...all from being so early.

Second, even if they are okay, you didn't see what it took to get there...all of the struggle, pain, fear, uncertainty, likely months (if not years) of medical care, rehab, etc.

Third, they may have delays you are not aware of. Most parents aren't going to advertise their child's struggles. There are very few babies born even at 24-29 weeks (sometimes even later) that do not face a major uphill battle. Heck, our friend had twins at 33 weeks and they had major issues. One is still developmentally delayed at 7.

I just feel like there is this glossing over of the fact that having a baby really early on is very serious. Even when they are just slightly early (like my DS), they still can have some issues. Yes, I know that everyone wants to be positive, but I also think it really downplays the struggle that preemie Moms face. And, of course, I realize that is nothing compared to a loss...I just merely wanted to point out that even if a baby survives, things can be rough.

IBackBevo · February 2014

ajsweeton said:

I'm so sorry for the loss of Eleanor. I struggle as well with whether or not I should be a "debbie-downer," but at the same time I want so badly to raise awareness of PTL. I was always aware of it when I was pg the first time, but I trusted my drs to tell me if everything was ok. They let me down and I think that is the most important thing to share with other women. Know your own body and accept that you know it better than anyone else. If you think something is wrong make damn sure someone checks everything out before you accept that everything is ok. It's hard to know when to speak up and when to keep quiet. I always feel like I'm spreading anxiety with my story, but if it helps even one person its totally worth it. We shouldn't have to hide our babies or our stories.

This times 1,000! Maybe times 1,000,000. I think of my own experience with pre-e and it basically going undiagnosed for weeks despite repeatedly being told everything was ok until I finally raised enough hell...you cannot be afraid to look like an alarmist if you know something is wrong. Every woman has to be her own advocate. And I truly believe that most of us have a gut instinct about things.

I have also found through repeated experiences with medical personal being very poorly educated/informed, that you have to take the time to educate yourself about these matters. You can't just assume your doctors know what they are talking about. I have run into some absolute bumbling morons with RN or MD behind their name who don't even know the basics.

giggler25 · February 2014

Bayberry12 said:

Thank you for bringing this up. Like you, I have kept pretty quiet when when people post their concerns or worries about symptoms or movement or whatever, because I don't want to be the one to scare the happy pregnant person with my horror story.
My daughter was still born at 39 weeks. Right at the end. VDay really means nothing to me. Of course I am hoping for a positive out come this time, but now I am very aware that things go wrong, a lot more then you would ever think. I have sat down in a room full of women in a large university hospital; educated women, healthy women, first time moms, third time moms, women who never missed a Drs appointment, and yet we all share the same story.

We are all very aware of SIDS and what we can try to do to prevent it, but what about all the other things that can go wrong? I don't mean you should dwell on the "what ifs" but I think it is very important to be aware. Most of us have the genetic screenings done to look for possible abnormalities, the counselors go over everything that these tests look for, all the things that could be wrong with our children, but how often has your Dr. mentioned the possibility a cord accident or stillbirth or placental abruption or accreta or PTL if you are not considered high risk? If your Dr. is anything like mine was, it will never be mentioned, even thought there are sings you can be on the look out for in a lot of cases.

So, I might be called an alarmist or paranoid or a downer by some on here because I jump at every little thing, but thats ok with me.

I am so terribly sorry to hear about your loss @Bayberry12. But I would encourage you to speak up, when you feel comfortable, if you have information to add. Personally, if I were to post a question on here about a weird symptom or something I was scared of, it would be to seek honest advice/help/experience. Having my dr. be silent and missing signs that I could've otherwise been on the lookout for is a constant fear of mine. In my opinion, if you feel comfortable sharing your story, you could potentially help save someone else from what you went through, if they know what signs to look for. Again, I'm so sorry to hear that you lost your LO like this. Lots of hugs to you.

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