07: Scott’s story of Alice’s birth, eclampsia and necrotizing enterocolitis

In this birth story podcast interview, dad Scott tells how his wife Jan developed eclampsia at 32 weeks pregnant with their daughter Alice and delivered her via emergency C-section. Because Alice was premature, she was diagnosed with necrotizing enterocolitis (NEC) and died 55 days later due to complications of NEC.

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Full Transcription

Scott 0:00
Her name is Alice.

And she made a funny noise when she slept. It’s one of the things that I remember the most, among other things she had that were memorable. But I remember that noise and I even recorded it on my phone. So kept that with me. I rarely listen to it, but she did make a really interesting noise that was–I’m not even sure if I can do it that well, but, yeah.

Lee 0:48
Welcome to Still A Part of Us, a podcast where moms and dads share the story of their children who are stillborn or who died in infancy. I’m Lee Redd, and on this episode, Scott is telling the story about his daughter, Alice, who was diagnosed with necrotizing enterocolitis, or NEC, and who passed away at 55 days.

As a word of caution to our listeners, the story contains emotional triggers of stillbirth and infant loss. Please keep yourself emotionally and mentally healthy, and seek help if needed. Also, be aware that these birth stories may differ from his or her partner’s, as these accounts are told from their own perspective, through the lenses of trauma, heartache, and the passage of time. Please respect our moms and dads who are brave and gracious to share their children with us.

Tell me a little about yourself, Scott.

Scott 2:00
Well, I’m a microbiologist, and I grew up in North Central Washington State in a very small town and moved to Utah when I was in middle school, and still here, so. But…

Lee 2:21
What are some hobbies that you have? Things that you would like to do?

Scott 2:26
Well, I liked to do pretty much everything. And a lot of my hobbies include just all sorts of random things, in rock climbing, coin collecting, running, biking, swimming, triathlons, that kind of thing. Bowling, I mean, you name it. I’ve gotten into a lot of various things. And there aren’t very many things that I don’t think that I could be interested in.

Lee 2:57
Not a lot of things you could be interested in, or a lot of things that you…?

Scott 3:02
…there are not a lot of things that…

Lee 3:03
…you would not NOT be interested in.

Scott 3:06
Yeah, exactly.

Lee 3:07
Okay. It’s one of those have to use a double negative to make it a positive.

Scott 3:12
And I just phrased it terribly.

Lee 3:15
I think you phrased it right. But…So let’s start talking about your daughter, Alice.

Scott 3:22

Lee 3:22
Where were you guys living when—? Were you in the Salt Lake Valley? Were you in Washington? Or?

Scott 3:29
No, we were in the Salt Lake Valley. We’re still in the home that we were in Sandy. And well, let’s see, when it all happened, I was asleep, kind of at the beginning of it. I work graveyards and have for, well, a lot of years. And I had come home in the morning. And I was asleep. And then about 10am, I think it was, my wife came in. So I’ve been asleep for about three hours. And my wife came in and woke me up and said something to the effect of, You know, I think everything is okay, but we should go into a hospital. And I think the very first immediate reaction I had was, kind of like, Why? Especially because I was so tired. But you know, I said okay, and got up and got ready. We drove into St. Marks [Hospital]. And by the time we got there, she had been complaining about some loss of vision. I think her vision was tunneling.

And so, we get in there, we go through the registration stuff, and then into some triage. And then they got her into a room and kind of put, you know, the belly band on and that kind of thing. So she was laying there, she’d just layed down on the bed. We were conversing–I don’t remember what about. And then you know, she just kind of started looking at the ceiling, like her eyes were open. And I had asked her a question, but there was no response. And so I thought it was kind of weird. So I repeated the question. Anyway, turns out, then she kind of started in a seizure, slightly tonic-colonic. And just around that time, a nurse was–I can’t remember if it was either crossing the hall or coming into the room just right there–anyway, she came in and saw it was happening. And so you know, they kind of called people in to stabilize her, kind of figure out what’s going on. And then they were working on her. There was, believe, there’s only one doctor in the hospital at that time, in that area, or some such, only one that was available. And she was in the room, they were trying to stabilize my wife. And they were working on her for a while. And then another doctor showed up that–this was I don’t even know how long later–he showed up and kind of took charge of the situation, got her more stable. You know, they were monitoring the monitoring the baby.

And then they, let’s see, they had moved her into a different room. Because they had to, some degree, stabilized her. Her blood pressure was really high. And she wasn’t responding. But because the blood pressure was so high, they were thinking that, you know, they kept a close eye on the baby, but they wanted to do something like get the baby out. So you know, they had a bunch of forums for you to fill. And were kind of, I guess, the bare minimum of giving me knowledge what was going on. And the doctor was telling me that they wanted to get her in for a Caesarian to get the baby out. And we were waiting for a little while in that room. They were they kept trying to make sure she was stabilized well enough, but I think her blood pressure was just so high. Eventually, they did get her out into the OR, and work on the Caesarian. Yeah, I just got some some news every now and again, when they would come back in and let me know, you know, what was going on? And what was happening. And then finally, they had told me that, you know, they had, they had gotten the baby out. And Jan was stabilized pretty well. And they were just finishing up with her.

Lee 7:47
So you were not allowed in for the Caesarian operation?

Scott 7:52
No, they they told me that I was going to be suiting up and going in, at first. And then as things kind of progressed, then they just, they were saying, you know, why don’t you stay here? Yeah, let’s not have you go in after all, so. So I didn’t actually end up in there. I was still in that room they had her in pre-OR, waiting. But they were fairly good at coming out in, I don’t know, 10-minute intervals, maybe and just kind of letting me know what was going on. And then finally, let me know that, you know, Jan was doing well, and they have the baby out. And that, you know, currently the baby was doing fine, but that she wasn’t breathing on her own. So they were breathing for her. And so that’s what I knew at that time. Finally, you know, Jen comes back in and she’s still out of it. And I don’t remember how much later, but sometime later, they came in, we’re saying okay, you know now you can come into the NICU and, you know, see the baby.

So went in there, saw her. She was on a respirator and that kind of thing. But you know, I remember seeing her and she was small. She was a preemie. But I also kind of remember thinking, she’s kind of larger than I had imagined, in my mind, in my mind. And she seemed a little bit long, like she’s kind of tall to me, even being as small as she was. Yes, saw her and they said that she was doing well. And so that was about five minutes or so I was in there, then came back. And that the rest of that time, that day was just kind of back and forth–family had shown up and just letting them know kind of what was going on. We were waiting for Jan to show, to come out and wake up. And she did slightly–let her know kind of what was going on. I remember her being disappointed, because I know that she wanted to kind of be involved in the birth and that kind of thing. And to just have a seizure and then be out the whole time. And of course, she was under for the Caesarian and everything. And anyway, so I remember her being kind of sad about that. And she fell asleep fairly soon after. And that was kind of the night there. Just made some trips to the NICU–watch them to do some things.

But it seemed like with her, with Alice, she didn’t take all that long to progress fairly well. I mean, they had her off the respirator within, it wasn’t even a day, it was, I don’t remember, acertain number of hours. And they were surprised by that. I mean, by the next day, she was just on a nasal cannula. And I remember all the nurses and people there thinking that she had such a personality, I mean, she was climbing up. They had kind of her incubator at an angle. And so she would climb up to the top and move around and constantly get out of a lot of the things that they were putting her in. So I think that one of the nicknames they had for was Houdini, because she was just like that. They would try to snuggle her up, and then she would end out of it, end up getting out of it and crawling around a lot, climbing around, and so that was kind of fun. But she progressed very quickly.

They did mention that she had a heart condition of some sort. And we had seen some cardiologist later. And they couldn’t figure out why her heart wasn’t operating at full capacity. It was–she seemed fine. I mean, they that was one of the things they couldn’t, they couldn’t find any symptoms of her heart operating at whatever percentage I said it was. She just seemed completely normal. But other than that, I mean, she seemed to be doing well. And then at one point, they found that she had, very early, started developing NEC, N-E-C. It’s necrotizing enterocolitis, where some some air, gas rather, ends up in the intestinal wall. And, you know, as long as they can catch it early, it’s usually fine. That’s also something that tends to happen more often in premature babies. They don’t often see that in, you know, term babies and that kind of thing. But they caught it early, they found, you know, small amounts of gas that were in the intestinal walls. You know, they act quickly on that, which is good, because if it gets too bad, it can actually rupture the wall and that’s no good. So they sent her up to Primary Children’s [Hospital]. We went up there and, and fairly quick, it seemed like they managed it, they got it under control. And that was the last we heard about it. Yeah, it wasn’t, it wasn’t really that big of an issue.

But eventually, you know, the time came where she was fine and, and was eating. You know, she was able to maintain her own temperatures, that kind of thing. So they released her and we took her home. And she was with us for, I don’t remember exactly, a certain number of weeks. And then I was at work at night–this was, well, I mean, remember what time. But maybe around midnight, or sometime late. And I had been–sometimes I text my wife on that there. And some–either she called me or texted me and saying something about how, you know, Alice was throwing up a lot and seemed upset, that kind of thing, and that she had called the on-call pediatrician. The pediatrician was recommending that we give her some some sort of like milk of magnesium or some sort of drink like that, Maalox or something like that. And so I left work and went to go try to find some. And I had to drive quite a ways because a lot of the, like Walgreens and things like that, they were all closed. But I did manage to find one that was open. I can’t remember if it was a Walgreens or QVC or–I don’t know what it was. But I made it in and did find just kind of like their own brand of Maalox, got it and took it home, tried to give it to her. She did seem kind of agitated, and she would kind of make these faces that were scary, kind of like “I can’t breathe” face. You know, turn all red and kind of like, you know, I’m not getting any oxygen, kind of a thing. It was pretty frightening.

But anyway, I think, yeah, I think I, I went back to work after delivering that. And then a little bit later, because we were trying to decide if we wanted to take her in. And then finally, you know, my wife was like, Well, you know, let’s, let’s take her in, we should take her in go into the ER. And, again, just kind of the very, the quickest thought I had was kind of like, well, you know why she’s fine. But, you know, I listened to my wife, which has always seemed to be the right, the right thing to do.

So we headed up to Primary Children’s, which was kind of a drive. But you know, we got up there, took her into the ER. And in fact, I remember right when we got there, we needed to change her diaper. We were worried partly because she he wasn’t really passing anything. There were no bowel movements or anything. But she had had one, either on the way or just when we got there. So we changed her diaper feeling a little bit better. But we got her in there, she seemed very pale, very white. And we waited for a while. They were doing some tests. Anyway, this is ending up being fairly long. But this is kind of what I think about when I think about the whole thing. They did some x-rays and everything. And then finally, after some time they found out, okay, well, she has a stricture in the colon or bowel or someplace. And it turns out that while her bowels were healing from the NEC that she had had, from this NEC, the healing process was making scar tissue. And so the scar tissue basically just kind of closed it off, so there was nothing making its way through.

So, you know, they told us well, we’re going to go in and just remove that stricture, and then just reattach each end. And then be on our way. And I thought, Oh, okay, well, easy enough. Go in and get that done. But, you know, at no time during any of this, any of this night, did I ever think that anything was seriously wrong with her–the whole time. I mean, even when they were like, Oh, you know, we’re going to take her in for surgery, it never dawned on me that, you know, surgery is kind of a big deal. Just seemed like, Okay, well, we’ll get this fixed. We’ll be back fairly quickly. I mean, it was starting to get early morning now. But you know, we’ll be back fairly quickly, things will continue on. I never thought anything was going to happen. And I remember, we went into a room to wait. And my wife came up to me and was saying something about, I can’t remember exactly, but something to the effect of like, Well, you know, if she passes, then everything will be okay, or we’re going to get through this or something. And I remember thinking, Where did that come from? That’s not anything that I was thinking at any time. So I remember at that time thinking, that’s kind of strange, you know, just, she’s overreacting.

But, you know, things kept progressing. They, the surgeons, were talking about how there was a lot more dead tissue, dead bowels in there that they, then they thought, so they had to remove a whole lot. And they were also trying to fight some of the problems that had resulted in there, some of the bacteria and things. They wanted to push a lot of hard antibiotics, they wanted to push a lot of fluid, they wanted to treat fairly aggressively to get at this. But the issue was, her coming back to her heart, they couldn’t push a lot of these things, because her heart couldn’t take that. So they had a number of doctors and finally it kind of came down to, I think they put over all of them, the cardiologist, the neonatal guy. And so he was the one kind of passing off, Well, you know, who could take her she was going to go into surgery or things like that. And he was monitoring her heart trying to figure out if she was strong enough to take the treatments they wanted to do. So part of the issue was that all the treatments they wanted to give her that couldn’t, and among other things, so it was just kind of a perfect storm of “no good”. Think she’d gone in for at least another surgery. And they kept removing more and more and a lot of the colon too, and things like that. So, so we didn’t know what the outcome was going to be for a while. Was she was going to, you know, just have a colostomy bag for the rest of her life, kind of a short bowel syndrome type thing? Or if she was in a lot more mortal danger? We–I wasn’t really sure, exactly. But I thought well, you know, whatever, it ends up being, you know, we will be, we will get through it, you know, and hoping that, you know, in whatever condition that she was going to be in that she would be there and we would do what we need to.

But yeah, but the whole day just kept going. By the time the night came, they had a new shift had come in with some different doctors. And we talked to that doctor. And my wife is a social worker and she just kind of told him well, you know, it was it’s hard to get really straight answers. Understandably, I think. You know, a lot of doctors don’t want to just come out and be very blunt about difficult things, especially if they are not even quite sure which way it’s going to go. And so, you know, they were always fairly optimistic, I thought with us. And then finally, my wife was kind of like, Well, you know, just tell us if you think that this is really bad, you know, we don’t know if, if we should be more optimistic? Or if realistically this, the chances are, this isn’t going to go very well. And so finally, you know, he was really good about it. And he finally said, Well, you know, realistically, the odds are not in her favor, for surviving. But, you know, obviously, they were still working on her, they were still trying to figure all this out. But I remember, at least at that time, being thankful for that, thinking, Okay, well, now I can at least know what to expect. Whereas before, it seemed like such a teeter-totter. I mean, I started out that whole night thinking, it’s preposterous to think that, you know, anything bad was going to happen. To moving into, you know, “Well, this doesn’t seem very good, is something bad going to happen?” Then “I have no idea” to finally like, “Probably, this isn’t going to end up very well.” So my wife and I were able to spend some time with that at least, and let it sink in for a few hours, I think. And, you know, we work closely with the doctors, Okay, you know, what’s going on now? And finally, when I got to the point where we thought, there’s just nothing else that we can do, we’ve, we’ve exhausted every option. You know, the doctors have tried everything they can, and there’s nothing left. Once we got to that point, we were like, Okay, well, then, you know, we understand, and we felt like that it was kind of how things were supposed to go.

So we told them, Okay, well, then, you know, we’re fine with stopping treatment and that kind of thing. And my, my dad had shown up. He’s from he’s, he was down in St. George at the time. So he had shown up at some point, during the later day. And he was there. Me and my wife, and I got to see her numerous times, but we kind of went in for a final time. And I remember thinking that she wasn’t even there for, I don’t know, some time. But when we had gone in to see or the last time, you know, she seemed pretty alert, I don’t know, she seemed there. Like she was, she was returning to see us. To say, goodbye, I guess or for now. She’d even held her grabbed my wife’s hand or finger or something like that. And so I remember thinking, Oh, I didn’t even think that she was there anymore.

I mean, I knew that she wasn’t there anymore. But she was then. And then, they had asked us if we wanted to, you know, hold her, be there. And I remember at that time, there’s no way that I could have done it. Not then. And I remember thinking that I was like there’s–no, you know. I can go in there and see her for, you know, this last time, but I just can’t do it. And I remember, you know, my wife was feeling the same way. And so we thought, No, we knew we can’t be there. But my dad, you know, asked if he could. And so he was in there. And he held her. And she passed. And he remarked to us later that she had left some time before they actually were pronouncing and you know, saying, Oh, you know, we’re, we’re not getting a lot of this. So he kind of knew when she was gone.

One of the things was that, for my dad. And it’s semi-interesting that ,thinking about this, is kind of a little bit more painful than thinking about my daughter. With her, I feel very happy about how things are now. Because I feel like they’re the way that things were always going to be, or meant to be. But thinking about my dad holding her is kind of sad to me. Because it wasn’t his first time doing that. He had held his mother when she passed, I can’t remember if his stepfather who, you know, he considered his father, I can’t remember if when he passed, he was there as well. But he held his mom in his arms when, at the time that she passed. He held my mom in his arms when she passed. And now he was holding my daughter in his arms. And it seems like he keeps getting relegated to these terrible situations. I think that’s kind of sad thinking about it now. But also, now I feel like I’m stronger. I kind of wish that, you know, instead of my dad, it was me. But I know that at the time, there’s no way that I could have.

And so I mean, we usually have a tendency to look at the past with 20/20 vision. I remember talking to my grandfather, kind of, about this and similar situations. And he was a clinical psychologist. And he was saying, you know, we usually look back through glass doors, but at the time, they’re opaque. We don’t know what’s on the other side of the door. So I think there are some things I tend to look back on, you know, see things more clearly. And I mean, that’s the way it should be. I hope that we all can do things like that, that helps us learn. But anyway, so my dad was there and held her when she left for good. And he knew she was gone, because he knew that my mom was there. And was there with her and, you know, taking her. So I mean, I guess by this point, it wouldn’t be a surprise that, you know, my faith is a part of the story as well. But clearly, for me, it’s been a very helpful part. A little bit different, I think, than possibly some others, is that I had gone through not the same experience, but something that I think helped prepare me for this particular experience. When I was 10, and that’s when my mother passed away. And so I had kind of been around when similar type, stressful and chaotic situations that resulted in the loss of a very close, loved one. So I’d gone through that when I was 10. And, and I really do feel like it taught me a number of important lessons. So I think I was able to carry those into this. Of course, having said that, I don’t think it matters how many lessons you learn. It’s hard. I mean, people know that.

But yeah, it was it was a very difficult situation, but I think that it wasn’t as bad as it could have been. Because of, you know, being there. When my mom had gone through the stuff that she had gone through, she passed from cancer. It was about two year battle that finally took her. She was home, you know, at the end. So going through that, I think helped. And then obviously, aside from that, is my faith? You know, it’s I know that she’s not gone, gone gone permanently, permanently. You know, she still exists and knows us. And there are times where we can feel her. It seems kind of random sometimes. And who knows, maybe there are many times that she’s there as well that we don’t feel that–we know she’s around. I’ve been feeling similar type things about my mom since I was 10. There’s been times where I knew that she was around. I mean, it’s difficult not being able to interact or see. But yeah, obviously that’s very helpful, helpful for me, and I’ve thought many times just how harder I think things would be without that. I try to imagine thinking that, you know, that’s just it, which many people do. And I just think, you know, that’s, that’s got to be extremely difficult, I feel.

Lee 30:59
Is there anything else at the hospital that you would like to talk about? Or did you bury your daughter? Did you have a funeral? Did you cremate your daughter? Or is there anything you would like to bring up about that?

Scott 31:12
Sure. We had a funeral. And so I mean, we felt pretty young to be, you know, grave shopping and doing all that kind of stuff. But yeah, we went through that we had a funeral. On the day of her funeral, when we got there at the cemetery, it was very windy. It was blowing a lot of things over, and I think people are commenting on how it just seems so windy. It was an interesting time. But yeah, we buried her. And it was a, it was a good ceremony. Yeah.

Lee 31:59
Is she close to where you guys are? Did you bury her–do you have family plots up in Washington, where you said you spent a lot of your youth, but–?

Scott 32:08
Yes, we–she’s close to us. She’s in Sandy. We also bought our own plots, next to her, as well. Another weird thing that I never thought I’d own. I mean, I feel young, so it’s kind of a strange thing to own. My mother is buried up in Washington State. And I believe my father’s plot is up there, as well. But no, she’s close to us. And I think that it’s nice, because it allows us to make trips there, you know, for celebrations of her birth. Or really just anytime that we feel like it. But yeah, whenever times come up, we head over there.

Lee 32:53
It is weird shopping for a gravestone and burial plots.

Scott 32:59
It’s very strange. I guess I would mention that at the hospital. I mean, it’s easy to see how a lot of these things lined up for not just her birth, but I mean, there were there were a lot of, you know, things that happened during the whole ordeal when she passed as well. But thinking back at the hospital on her birth, you know, at the time that my wife woke me up, I was really tired. I’d been asleep, two or three hours or something at that point. And it’s kind of at the point where when you wake up, you are confused, and trying to make sense of what you’re hearing and even what you see sometimes, you know, like, what’s, what’s happening. And then also immediately thinking like, you know, Well, I’m tired. If everything is fine, then why? But then just doing it, thinking like, Okay, let’s go.

Going. And then also, I mean, by the time we got there, and when, by the time we got there, and the time that she started having her seizure was a very short period of time. And it was no sooner that she laid down in the hospital bed, and they had put the belly band on, she laid down. And then that’s basically when you know that whole birth ordeal happened. So I–there’s so many things that kind of lined up, it seems we just made it there in time. And she felt like, you know that we should go.

And then they’re not being any doctors there. So revisiting that story, the doctor that had come into help try to figure out what was going on, had no idea what was going on. And then, a short time later, the doctor that came in and started taking charge, he knew exactly what was going on. And he knew that it was eclampsia. And apparently, very few doctors in the country have actually seen eclampsia. There’s there’s a lot of preeclampsia, it seems like, but the eclampsia, you’ll find more in, like maybe, I don’t know, some just high risk areas, it seems like is where you’ll find them. And he had specialized in this high-risk, and it spent a lot of time in Chicago and was working, you know, as this high-risk doctor seeing a lot of cases, least for in general, have eclampsia. And so he knew what it was and what to do. And I think in the entire state of Utah, he may have been the only one who knows what it is, and how to do things with it. So it was really interesting that we get there. And then she gets into bed, has the seizure. And the one guy who would have known what to do, happens to be passing in the area. And he told us later, that he was just wandering through. I mean, he, he had no idea who my wife was. He had no idea of anything that was going on and just kind of saw commotion happening. So he came over to see what was going on. And it turns out that he was the one who was taking charge. He also he performed the Caesarian and became our doctor later. A lot of these things just seem to line up for that. So I think that it’s also kind of fun to point those things out in the story as well, because the one guy that could have done anything with that ended up showing up.

If my wife had not woken me up as well, sometimes I think about this, she would have had her seizure at home. I would have had no idea because I would have been completely out of it sleeping. They both would have just passed right there. You know, I would have just woken up to see her on the floor, and then both gone. So I think that it was a blessing to, even though my daughter did eventually pass, to have the time that we did with her that she was able to come for, you know, a very short amount of time. But we had that time with her. And also my wife is still here as well, so these are blessings, I think.

Lee 37:48
I’d personally like to thank Scott for coming on the podcast. It takes a lot for a person to open himself up and show the vulnerable side. And thank you again for sharing your story about Alice with us.

Head over to our website, Stillapartofus.com where you could find the show notes including a full transcription of this interview and any resources that were mentioned. Also, you can sign up for our short and helpful email newsletter. At the website, you can also learn how to become a patron and support the work it takes to produce this show for just a few dollars a month. And lastly, you could find out how to get in touch with us if you want to share your child’s story on the show.

This show was produced and edited by Winter and Lee Redd. Thanks to Josh Woodward for letting us use this song “She Dreams in Blue.” You can find him at JoshWoodward.com.

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