cover of episode 249: What if you knew your baby was going to die?

249: What if you knew your baby was going to die?

2022/10/4
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This Is Actually Happening

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This Is Actually Happening features real experiences that often include traumatic events. Please consult the show notes for specific content warnings on each episode and for more information about support services. My mind was racing a thousand miles a minute because I don't think in my life I have ever had a problem where I did not have a solution and there was no solution for this problem.

From Wondery, I'm Witt Misseldein. You're listening to This Is Actually Happening. Episode 249. What if you knew your baby was going to die?

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I grew up in a very stable background. My parents are still married to this day. We were a really close family. I have one sibling who I'm very close with.

Neither of my parents went to college. They worked really hard to get us to where we were. We lived in a middle-class neighborhood in a nice area. We were really blessed that my parents would sometimes go without things for themselves so that my sibling and I could have a wonderful childhood.

They were very supportive, but they did have this concept of we always had to do the right thing. And it was sort of do the right thing according to them. But I had a very charmed upbringing, basically. I was a rule follower. I loved to follow rules always. I did not cause trouble.

My parents said, this is the activity. I would follow it through to the end, rather I liked it or not. I would complain about it, but I would show up and I always did what was expected of me because I was always worried about being perceived as being a cooperative and well-behaved child.

My family was not super religious, but we were Catholic. I went to Catholic grade school and I went to Catholic high school. I did participate as an altar server in the Catholic church and I received all of my sacraments. But my relationship with my faith really comes back to that expectation to always do the right thing and be behaving properly.

As I was growing up, I definitely had a hard time finding my place socially. I had a group of friends, but I definitely wasn't comfortable with myself. I was a little bit awkward. I just had a hard time finding a social group that I fit into. I would sort of offset some of that with participating in youth groups and religious activities as a way to kind of find a social group.

But when I was in my early 20s, I sort of left some of the religious aspect of my life behind because I didn't need it so much as I sort of grew into myself.

After high school, I followed a normal trajectory into college. Once I graduated, I started my career. I continued to follow the expected path. I met my husband when I was in my early 20s. We got engaged. We got married in the Catholic Church.

We bought a house together and we kept doing all of the things that were expected of us. We knew that we were supposed to be engaged and married before we lived together. We knew that our wedding needed to be in a Catholic church. And we just continued doing what we thought was expected of us as we grew up into adults again.

My husband and I have a very strong relationship. We met when we were very young. We thought we were very mature at 22 and 23, but we were very young. So we have spent almost the entirety of our adult lives together. And he is very supportive and where I'm very reactionary. He's very calm and we really balance each other out in that aspect.

I definitely did not have a strong self-identity until the past few years. I think that through my 20s, I was more confident with my personality and with my social circle, but I did not fully form all of my own opinions about

I made decisions based on how people would perceive my choices. I never wanted people to think poorly of me. So I spent a lot of my energy worrying about what people would think.

My parents are both very staunch Republicans. They're very conservative. And that was just the tone of our political discussions growing up. And I just had the perception that anything that wasn't those beliefs was just foolish and was not necessarily a respectable political belief because that's what I grew up learning.

When I was younger, in my late teens and early 20s, it was something that I was definitely more vocal about and that I was very defensive of, that I had more conservative viewpoints. And again, my viewpoints socially, especially around like gay marriage, I never agreed with the Republican Party viewpoints on those aspects. But in other aspects, I really did think that I agreed strongly with the Republican Party.

And as a young adult, I definitely mimicked their political beliefs and just sort of accepted that that was my beliefs as well. And as I got older, into my early to late 20s, I stopped being as vocal and as defensive of those viewpoints, but I definitely still internally held a lot of those similar beliefs back.

I was 33 years old and we had two children and they were my whole world. I still had a corporate career. I was only working part-time at that point and I was home with my older two children and my husband said he wanted to try to have a third child.

I was all in. There was no conflict around the decision. We were in agreement that it was the right choice for our family. I was very blessed that I have never had any fertility issues. So we got pregnant right away and we were very excited and we were anticipating having another perfect little baby like the first two that we had.

Everything was moving along really smoothly. My biggest concern during the pregnancy was that I did not want to have an epidural with my first two pregnancies deliveries. I had a terrible experience with both epidurals. So I had switched to a midwives practice to try and have an unmedicated delivery, which everyone thought was crazy, but I was fully committed.

The pregnancy was going really smoothly. I went to my 12-week ultrasound. There were no problems. All my regular visits, there were absolutely no reasons for concern whatsoever.

I had my 20-week ultrasound scheduled for a day that my mom was visiting from out of town. My parents live far away now. They have to fly to see me. So as a surprise, I had scheduled the ultrasound for the day that I knew she would be there. So my mom, my younger daughter, my husband, and I went to the midwife's office for the ultrasound.

So we got to the appointment. We're all in the room. The ultrasound tech starts the ultrasound and she says, Jenny, have you been leaking any fluid? And I was very confused. And I said, what do you mean? And she said, you have absolutely no amniotic fluid. I felt like the world had stopped around me.

This ringing in my ears, and I just could not perceive anything beyond my person at that point because I knew that something was seriously wrong. The ultrasound tech seemed very frazzled, and she was very cold. It was a very odd experience. And she hastily finished up the ultrasound, and they sent me back out to the waiting room to meet with the midwife.

My two-year-old daughter and my mom were there, and it was really a traumatic experience for everyone. But I don't even really remember all of it because it was truly like time just stood still. I could not process what it meant to not have a completely healthy pregnancy because I've never had that experience before. So I just felt almost paralyzed.

They finally called us back in to meet with the midwife and the midwife was obviously very frazzled as well. They had just my husband and I come back and they said there's nothing that can be done to treat this condition. A baby with no amniotic fluid cannot develop properly and is never going to be a viable pregnancy.

There's nothing we can do. You need to go to the hospital and see if your water has broke because that would be a dangerous situation for you and we'll go from there. My mind was racing a thousand miles a minute because I don't think in my life I have ever had a problem where I did not have a solution and there was no solution for this problem.

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And the next, something goes wrong. But with ADT's 24-7 professional monitoring, you still feel safe. Because when every second counts, count on ADT. Visit ADT.com today. I was actively pregnant with a baby that was not going to survive. And I was also having to accept that for the first time in my life, there was something that was truly out of my control.

So I was just sitting there in shock with my brain scrambling, trying to figure out what I could do to fix this problem. And it was almost impossible for me to accept at that moment that there would not be a solution whatsoever.

I felt like I could not even breathe. It was truly the most unbelievable emotional pain that anyone could ever experience. Externally, I probably appeared a lot calmer than I was feeling internally. And I was really depending on my husband to help me make these decisions that we were going to need to make because they were so overwhelming.

I spent a lot of energy trying to make people comfortable in situations where I may have been uncomfortable.

For example, you know, we're in the hospital trying to find out what the diagnosis is. And I'm apologizing to the nurses like, oh, sorry, you know, that you had to make this triage room set up for us because there's no space. I always try to make people comfortable, even if the situation is uncomfortable. Yeah.

So I spent the next three days in complete state of limbo and I truly had no idea what was going on. So I had to just sit at home and wait.

And no one could give me any information in those three days. And it was just truly like time was crawling by. I was just truly unable to think about anything other than possible outcomes for my pregnancy. And there was no positive outcome. I was just holding on to some sort of hope.

I had to sort of go through my day and go through the motions of taking care of my two children. My husband stayed home from work and tried to help, but he was also grieving. And we just sort of sat with each other in silence most of the time because there were just no words to describe the amount of emotional pain we were experiencing.

So we were able to see a specialist three days after my first anatomical ultrasound. They were able to do a more in-depth ultrasound, and it was reviewed by a doctor that specializes in this type of medicine. And they were the ones that finally said out loud, there would be no way.

way to have a positive outcome. The baby could possibly be born alive, but there would be no lung development. The baby did not have functioning kidneys. The baby was not developing a stomach. So even if the baby was born alive, there would be no way for the baby to survive after the baby was born.

They then counseled us in our options.

We could terminate the pregnancy. We could wait and see if we had a miscarriage or we could wait and deliver the baby. And then once the baby was born, there were no real options for any sort of life-saving treatments. The baby would just succumb to the lack of lung development within the first month.

moments or hours after the baby was born. It was just so overwhelming. We lived in a state where we had up to 24 weeks to terminate the pregnancy. We, at this point, were around 21 weeks. So we had about three weeks to make our decision to terminate the pregnancy if we chose that path.

From pretty early on in the decision-making process, we both agreed that we did not want to terminate the pregnancy. We had been raised in this Catholic upbringing, in this conservative upbringing, where you didn't have an abortion. So I couldn't even conceptualize terminating my pregnancy that was a pregnancy that I wanted and a baby that I wanted.

We were going to need to find a doctor to help us get through the rest of the pregnancy. So the first OB that I saw, I ended up going by myself to

I didn't realize that he was going to sit down and explain in detail my options for termination. And it was really traumatic because I didn't actually understand how a termination was performed at that later stage of pregnancy. He kept describing my baby as the pregnancy. He wouldn't say the baby.

And I just had a really hard time forming any sort of rapport with him because of how callous he was about my baby. Because to me, it was a baby that I wanted and that was loved. And to him, it was a medical problem.

Because to him, it was such an obvious choice that I would just terminate the pregnancy. When for me, it was something that was so devastating. I was so lucky that I had the resources and the emotional support to continue this pregnancy and that I was healthy enough to continue this pregnancy. And I just kept thinking about someone that did not have the resources and the support that I had.

If they weren't able to have access to this doctor and this procedure, how would they make it through the pregnancy that I was about to try to endure? I had always been raised in a Catholic and conservative household, and I was essentially pro-life for myself, but I was always a little bit torn on the topic of abortion.

But in my mind, abortion was for people that did not want their pregnancy. And I knew that even from a young age, my entitled place and position of privilege that if I had a pregnancy, I would just find a way to make it work. And I wasn't ever going to have to deal with having an abortion.

I was now in a position where the solution for the baby's diagnosis was to terminate the pregnancy. A lot of the medical professionals that I was meeting with were very kind and respectful, but it was also very apparent that they did not understand why a person would want to continue a pregnancy that was going to have a terminal diagnosis for the baby.

I had never conceptualized that abortions would also be offered to people that wanted their baby and that had to make this decision because of the situation with the status of the pregnancy. Now, I realize that it's so much more nuanced and that it was something that was really important that would be an option.

The doctor explained to me very clearly that I was in a state where this was available to me and that this was not something that was available universally across the country, which I knew, but I didn't really understand until that moment how significant of an impact that

that lack of access to this very important service would have for someone that was in my exact situation, but maybe with fewer resources or a different support system, just because they live a few hundred miles away in a different place, that they'd be forced to endure something that would really have such a huge impact on their life permanently.

Not maybe immediately, but over the next few months, I became more uncomfortable with the fact that I had spent a portion of my life voting for people that would restrict this access to other women and force them to endure such a horrible emotional pain just because of a religious belief.

I had met with the neonatology group at the hospital just to understand when the baby was born, would the baby be experiencing any pain? Because if the baby was going to be born and it was going to be painful, I don't think I would have continued the pregnancy.

But they assured me that the baby would not experience pain if the baby even got to the point to be able to be born alive. And they said we would just offer palliative care. There'd be no life-saving efforts. And everyone was in agreement that the baby would be comfortable. So I was comfortable at that point.

continuing the pregnancy as long as I could find a doctor that agreed that continuing the pregnancy was safe.

I found a doctor who was wonderful. He understood my point of view that the baby was loved and that terminating the pregnancy would be too difficult for me. And he was comfortable continuing providing me care. And I was not at any point in any real risk beyond the regular risk of being pregnant.

The next big hurdle was telling my children that the baby would not be able to come home. One night when we were reading books,

My older daughter made a comment about my belly and the baby. And I said, well, there's something that mommy and daddy need to tell you. This baby is a really special baby, but she is not going to be able to live when she's outside of mommy's belly. So mommy's belly will keep growing and have the baby, but then the baby won't be able to come home and live with us. She's going to go to heaven.

My children were confused, but luckily they were very young, so they accepted the news.

Then I had to sort of go through the motions of being very pregnant and having a lot of strangers ask a lot of questions about my pregnancy. And that was really difficult to just continue to be visibly pregnant and have people inquire about my pregnancy. And then also having to tell my friends and family everything.

In addition to my pain and how sad and upset I was, every time I told someone, I also sort of had to sit with their pain and their discomfort with the conversation. And everyone asks the same questions. Are you sure there's nothing you can do? What about X? What about Y? What about Z? And it's really difficult to have that same conversation over and over again. And it's really difficult to

to see so many people hear the news and internalize the news. I always try to make people comfortable in an uncomfortable situation. So a lot of the time I would try to find a way to make a joke or to lighten the mood or to change the topic when really I was the person that was suffering the most and I should not have been so worried about other people's feelings.

The entire duration of the pregnancy was almost like an out-of-body experience. I did start seeing a perinatal loss therapist to try and help deal with some of my emotions. I think that she really helped me understand that it was okay for people around me to be uncomfortable and that I didn't need to carry that burden anymore.

Leading up to the delivery, I had to come to terms with the fact that I was going to have to have a C-section. I was not going to be able to have the unmedicated birth of my dreams because of the position that the baby was in and the physical attributes of the baby. So I had to come to terms with that.

Another thing I was dealing with was that it was an incredibly painful pregnancy because the amniotic fluid really protects the mother from feeling the baby, which is bones inside of you. So I was very uncomfortable all the time because the baby was not cushioned at all inside of me. So I could feel every move the baby made.

I also had to start planning for a funeral home and a plan for a funeral, which is just truly an experience that I don't know if you can describe. To be pregnant with a baby and at the same time be planning for what kind of funeral and what funeral home you want to use.

We knew that we wanted to have a Catholic funeral for the baby. We knew that if the baby was born alive, we wanted the baby to be baptized.

So I got in touch with the nurses that worked at the hospital where I was going to be delivering the baby. They have a nurse specifically handles bereavement treatment. Typically, you deal with this nurse if you've had a miscarriage or if you deliver a baby that passes away. Very few people deliver a baby knowing that the baby will die soon.

And then I spoke with a priest at the church that my husband and I and our children belong to in town. And I explained to him the situation. And he obviously was very kind and very understanding. And then we had to make the final decision if we would have the baby buried in a casket or cremated.

We made all of those decisions before the baby was born to sort of take a little bit of the burden away from the actual day of the delivery.

I never questioned my decision to continue the pregnancy. I was completely committed to meeting this baby and I was desperate to meet the baby alive. And I really don't know why. It was just something that was really important to me. Once I got past 24 weeks pregnant, you're no longer able to terminate the pregnancy in the state that I live in.

I was going to have to remain pregnant until 36 weeks. And that was the earliest time that a doctor would be able to perform a C-section or induce labor unless at some point it became life-threatening for me to continue to be pregnant.

So we had scheduled a C-section for exactly 36 weeks. So I knew the day that I would be going to deliver the baby. The weekend before, my husband took my older children away for the day, took them to visit his parents, and I cleaned the whole house. And I was just alone for a while. And when he got home, I remember telling him, I can't believe this is happening.

I can't believe this will be my last week with her. I went to the hospital and the nurses got me ready for the C-section. It was just really a very somber experience, really a surreal experience. It wasn't a joyful delivery like the other deliveries that I've had. Everyone was very quiet.

I had not had a C-section before, and the whole experience of having a C-section is sort of undignified. You're in this bright room on this cold table, and you're basically naked in front of all of these strangers, and it's sort of added to the trauma of the day.

It was just a lot of crying. My husband and I had to be separated for a little while while they got me prepped for the surgery. And that was really hard to just be alone. He was alone and I was alone with strangers, basically. The doctor performed the C-section. He was very kind and he explained all the steps and the baby was born.

She looked like a perfectly healthy and normal baby and she cried and I was not expecting her to cry. I really didn't know what to expect, but I just kept saying, how is she crying? How is she crying? Because I was really shocked that she was able to cry and she cried for a while, a few minutes.

At one point before the delivery, one of the nurses said, well, we'll let you hold her if we can. When you have a C-section, you can't always hold the baby.

And that was really devastating to me to think that I might not be able to hold her. Luckily, the doctor from the neonatal group that we had met with when we first found out the diagnosis made sure to be there for me, which was really so kind. And he made sure that they gave me my baby right away. I was able to hold her. And that was really so special.

We just spent every minute that we could holding her and kissing her and telling her that we loved her. At one point when they were finishing the surgery, my husband and the baby had to leave the operating room, but I was separated from them. That was really hard.

When I went back out, they were able to get a priest from a local church to come to perform her baptism. So we have her baptism certificate, and that was really special. My husband and I just sort of both took turns holding her until they were no longer able to hear a heartbeat. That's when they pronounced that she was dead. Oh, God.

I knew that there would be a very definitive end to this period of my life. And it was really surreal to be on the other side of that. It's one thing to know that something is going to happen, but it's very different to experience being on the other side of it. The finality of it was really very overwhelming.

They moved us to a hospital room once I was out of recovery from my C-section. And they actually let my children come. And that was another big decision that we had to make.

We talked about it a lot, my husband and I, and we decided that it was something that we should do because if we regret it, not letting them come meet her, we could never go back and redo it. So we did have them come. It was really special that they got to meet her and have their own experience with her.

Being in the hospital for a few days was really terrible. I wanted to be home, but I had had a C-section, so I was sort of trapped at the hospital, and I just wanted to be out of there. But then when it actually came time to leave the hospital, it really was shutting the door on that chapter, and that was really difficult. I remember...

being very overwhelmed about leaving the hospital because I was really finally leaving that pregnancy and that period of my life behind. And I was starting my new life where I was the parent of a baby that had died

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To go from having this moment where you have this loss that's so earth shattering to then having to sort of reenter your life and you have these children that need you. You have this job you have to go back to and this house you have to run. And it's really a difficult situation to try and navigate.

There is no blueprint and there is no one that can tell you the right way to sort of move forward. I never know how to answer certain questions properly. When you meet someone and they say, how many children do you have?

I don't really know the best way to answer that because I don't want to not count this baby that's so special to me. But I also don't feel like explaining to a new acquaintance or a stranger what happened. I became a more understanding person.

Similar to how I thought that people only terminated pregnancies they didn't want, and I didn't really understand the bigger picture of what abortion rights mean for all women, for all different nuanced scenarios. I struggled.

sort of started applying that to other experiences that I had with people around being less judgmental about how people parent different than I do or how people come to different conclusions on things that I do. I think that I really started to become more understanding and see the bigger picture because you truly don't know all of the things that a person is going through

or all of the things that are impacting someone's decision. I chose to continue this pregnancy. I immediately realized that that wasn't the best decision for everyone. And I think that was like a huge shift in my mentality that just because I do it this way doesn't mean that other people should also do it that way. That isn't the best choice for them.

The biggest challenge of my beliefs shifting is how to approach family and close acquaintances that still are used to the old belief set that I had. It's really difficult to change so fundamentally and so quickly.

how to approach it specifically with my parents. They still are the same people they were before. They obviously suffered this significant loss and watched me and my husband and my children go through this really difficult time. But it's not the same experience that I had where my beliefs changed so drastically because it was such a before and after incident.

This is the point in time where everything changed for me. We're still figuring out how to talk to each other about certain topics where we used to be very aligned. And now I'm very not aligned. And it's hard to kind of come to a middle ground when there didn't used to need to be a middle ground.

I understand where people are coming from when they say that they are pro-life and very sympathetic and empathetic to the point of view that you're protecting a life by preventing an abortion.

I also understand that there are people that don't see that as a life and that they don't have that same viewpoint. And that's people coming from two completely different points of view that are never going to understand one another. Being able to choose to continue my pregnancy while

was an easy choice for me because I knew I had another option. And I never regret it or looked back and wished that I had made a different decision. But I think now, having lived through the experience, and now that I have more information about

around terminating a pregnancy and the care that's available to me. I don't know if this situation came up again in my life, which hopefully it would not. I would continue with the pregnancy. I have people in my life that say things like, I really respect you because you kept the pregnancy and I didn't do it for their respect.

I wonder what they would say to me if I had terminated the pregnancy. Would they not have respect for me for making such a difficult decision?

If the mother, the pregnant person, and the doctor are comfortable with the procedure for whatever the reason is, that's their decision to make. And if you think that they're terminating a life, then that's their cross to bear for them to know that they terminated that life. But if to them, that's not what they did, that they didn't terminate a life, it's just that they

ended a pregnancy that they couldn't support, that that's their decision to make. And I don't think that it's up to a legislator to decide when that procedure is appropriate.

My shift in my political views, which started over the past five to 10 years, really come from an empathy I have for people that do not have the same level of privilege that I have. I'm not oblivious to the fact that I have led a relatively easy life.

People can get caught up in an idea without understanding the full nuance of the situation. People are so easily caught up in the most extreme examples or the most inflammatory examples of a situation or a scenario and that it's really important to stop, to take a step back and look at the bigger picture and what are you really saying when you make that statement.

The grief of losing a child is truly an indescribable pain and sadness. It's just an all-consuming pain.

I really don't like when people say you can't know because you didn't experience it, because I think that that's kind of dismissive of people's feelings. And this is the first time that I've truly in my heart believed this is something you can't understand unless you experience it.

Next month will be three years since we found out that the baby would not survive since that 20-week ultrasound where the whole world turned upside down. The baby was born in January of 2020. And in the midst of our very early grieving, we were confronted with the COVID crisis.

It was very difficult because it added a lot of extra anxiety to an already very difficult point in our lives. But I think in some ways it did help because grieving a child in public is very difficult.

Every person you see is so sad for you. And then you're faced over and over again with their grief as well as your own grief. Quarantine was very isolating in some ways, but it gave me time to heal by myself.

When people know something sad happened or that they know that you're grieving, they want to be part of it for some reason. They want to identify with your sadness or they want to grieve with you.

And I think that if it didn't happen to you, sometimes it's okay to just let that person have their own experience and not try to find a way to connect with them on the same level. Sometimes it's okay to just let the person tell you that they're grieving and to just be there to comfort them and not have to find a way to insert yourself into their grief process.

The pain takes a long time to go away. I used to keep track of how many days in a row that I would cry. And then finally, it was like the first day that I didn't cry that whole day. And it felt like, OK, I'm making some progress.

Now, you know, I don't cry most days. It's very rare that I do. But when I think about the experience and the loss, it's something that I really feel inside, such a tightness in my chest that will just never fully go away forever going forward. You're the person that had a baby that died and

And it's always this thing that's sort of looming out there. And you're not just a regular mom in the mom's club anymore now. You're the mom that had the baby that died. And it's really a weird thing. It just adds to the injustice of the entire situation. It's not just this moment in time that you had this tragedy. It's this label that sort of follows you, this thing that you have to live with.

Forever.

Today's episode was co-produced by me and Andrew Waits, with special thanks to the This Is Actually Happening team, including Ellen Westberg. The intro music features the song Illabi by Tipper. You can join the community on the This Is Actually Happening discussion group on Facebook, or follow us on Instagram at ActuallyHappening.

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Hey, I'm Mike Corey, the host of Wondery's podcast, Against the Odds. In each episode, we share thrilling true stories of survival, putting you in the shoes of the people who live to tell the tale. In our next season, it's July 6th, 1988, and workers are settling into the night shift aboard Piper Alpha, the world's largest offshore oil rig.

Home to 226 men, the rig is stationed in the stormy North Sea off the coast of Scotland. At around 10 p.m., workers accidentally trigger a gas leak that leads to an explosion and a fire. As they wait to be rescued, the workers soon realize that Piper Alpha has transformed into a death trap. Follow Against the Odds wherever you get your podcasts. You can listen ad-free on Amazon Music or the Wondery app.