E7: Grief, Choice, & Parenting After Loss ft. Jane Armstrong (part 1)

This week's guest is Jane Armstrong, LCSW-S, QCSW, PMH-C. Jane is a TFMR & miscarriage mom, a native Texan transplanted in Colorado, & a clinical social worker certified in perinatal mental health. Following the birth & death of her first child, Frankie, through TFMR, Jane opened Both/And Therapy, PPLC to provide therapy & support groups to other TFMR parents. These services provide support around the unique barriers & grief of ending a wanted pregnancy, particularly in states where such care is no longer accessible. She also started her @tfmrsocialworker account on Instagram to raise awareness, reduce stigma, & help TFMR parents to know that they are not alone. She’s passionate about building community, eliminating shame, & honoring grief for TFMR families everywhere.

KEY TAKEAWAYS:

• defining TFMR and why words matter
• how laws and timelines limit medical care
• the shock and silence of a hard ultrasound
• diagnosis details and the Google spiral
• different coping styles inside a marriage
• hope, miracle language, and faith tensions
• the myth of control in family building
• grief, isolation, and finding support

SUPPORT PATHWAY

If you are a bereaved dad who's quietly struggling to cope with baby loss and you'd like to talk one-on-one, let's have a private 20-minute conversation by emailing info@dadalways.com. 

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Theme Music: "Love Letter” was created using AI as a creative tool, with lyrics and direction shaped by the personal experiences and emotional intent of the host.

Show Music from Soundstripe

Life In Slow Motion by Adam Agin

Ghostly Trails by Alsever Lake

Transcript

Welcome And Guest Introduction

SPEAKER_01 0:00

A lot of our conversations, I was focused 100% on Frankie. And my husband was able to pull in other variables. And I remember at the time I was really angry at him for worrying about other things. And I remember thinking, who cares? Which is a terrible thing to say to your husband.

SPEAKER_00 0:31

Hi, I'm Kelly Jean-Philippe. And welcome to Dad Always, the podcast exploring what it means to be a dad, even after baby loss. And I am excited to be joined with a guest who I've been looking forward to speaking with for quite some time. And I already know that before we even dive into the conversation, the topic that we're going to discuss today is going to be of value to so many people. And I'm looking forward to learning from this conversation myself. So I'm going to ask her to please introduce herself and then we'll just get right into the conversation. So thank you for being with me today on the Dad Always podcast. Please let us know who you are and a little bit more about yourself.

Defining TFMR And Misunderstandings

SPEAKER_01 1:41

Yeah, hi everybody. My name is Jane Armstrong. You may know me as TFMR Social Worker on Instagram. I am a licensed clinical social worker and therapist with TFMR parents, licensed in Texas, Colorado, now also Florida, Idaho, and South Carolina. So I'm getting out there. TFMR, if you're unfamiliar, stands for termination for medical reasons, which is someone in the position of ending a wanted pregnancy for their own health andor the health of their babies. So that can include fatal and non-fatal diagnoses. That can include a diagnosis with baby or with the pregnant parent. It can be a physical or mental health diagnosis. These are really complex and very intensely devastating losses and often really misunderstood. I went through my own TFMR experience with my first child, my son Frankie, in 2021. And that was what brought me into this work. I was a school social worker before that and found that even as a licensed mental health professional already, I was struggling to find what I needed in Texas at the time. So I thought, I'll make it. And here we are several years later.

TFMR And The Abortion Debate

SPEAKER_00 3:05

I'm so grateful that you decided to make that space for folks like yourself who have this experience, very devastating, difficult, complex experience. And for people like myself who professionally I'm exposed to it, but I can't say that on a personal level, I understand it or I have any categories for it, like I was saying to you before we hit record. Off the bat, the the thing that stood out to me from what you said is that uh these are wanted pregnancies. And I think some people who have a little exposure to that might hear that and immediately go to that hot topic of now it escapes me, abortion. And so that's let's address that. We don't have to we don't have to dive deep into it. This doesn't have to turn into a debate or a conversation about pro-life, pro-choice, or any of those other peripheral things. But respond to to that first instinct, please.

SPEAKER_01 4:13

Yeah, absolutely. So TFMR and abortion are intimately connected and in you know the most basic definition are one and the same. There can be a lot of discomfort with the inclusion of the word abortion in conversations with termination for medical reasons. And that's part of what makes it so complex. Part of that hesitation can come from TFMR parents not wanting to be misunderstood or miscategorized, where you know we have this narrative as a society that people who access abortion care are careless, are pregnant, and don't want to be pregnant, are somehow unfit to be parents, despite the fact that many, many people who seek abortion care are already parents to living children. And TFMR parents are across the board affected by any limits on abortion care in their state. So for families who are potentially learning about a diagnosis in their pregnancy at the NIPT, which is around 10 to 12 weeks, or an anatomy scan, which is usually around 20 weeks, fans at six weeks, 15 weeks, 24 weeks, even can really apply pressure and add barriers and timing issues to accessing the care that they may need in the event that they determine the best thing for them, for themselves, their families, and their babies is to end the pregnancy. It's also complex for the fact that TFMR parents are not really in the abortion debate on either side. So in anti-abortion conversations, you'll hear a lot of that narrative of who it is who seeks abortions or why it's right or wrong and very black and white language. They'll use some language that overlaps with what you'll hear from TFMR parents. For example, they will more often use the word baby, which a lot of TFMR parents will use as opposed to fetus. They'll talk about the preciousness of life, which is often a variable in TFMR parents' decision making as well as quality of life. And on the other side of the debate, for pro-choice states or pro-choice arguments, you'll hear a lot of terminology that excludes TFMR parents, like cluster of cells as opposed to baby, or talk about the right to make decisions about parenting in terms of whether or not someone wants to be a parent versus whether or not someone is able to parent the baby they are currently pregnant with due to health issues. It's really isolating to feel like this major debate is impacting your family and your health in such intimate ways, but not see your own story represented because it's inconvenient to the narratives of either side. So a lot of folks who go through TFMR will describe themselves as pro-choice or pro-life before their experience, and then find their values shaken up a bit, or find that they learn something about themselves or the world they did not understand in the same way before. But it is intimately connected with the abortion debate. I'll repeat again that any limit to abortion negatively impacts TFMR families in a number of ways that we can go into later. But it's a crucial element to the ways people may or may not be able to receive care, the trauma it can add to accessing care, and the ways that they grieve following a loss, how the abortion debate is going at the moment.

Policy Barriers And Timing Pressures

SPEAKER_00 8:22

I want to sit for the duration of our conversation trying to get into uh your psyche, into the psyche of other parents who have been thrusted into the world of baby loss because of something that is so uh out of your control. I think every iteration of baby loss brings about its own nuance. And I think what's common is that no one ever signs up for this to happen. I do think that there is a factor in TFMR families because, like you stated in the beginning, this was a wanted pregnancy and up until a certain point of the gestation you are not aware of the things that you're not aware of. So take me into that initial shock for you and your experience of having to find out the or going into that scan and your world being entirely rocked.

The Shock Of A Devastating Scan

SPEAKER_01 9:30

Yeah. The um that shock factor is is absolutely a theme I hear all the time with TFMR parents. And for myself, I was pregnant with my son Frankie in the height of the COVID pandemic. So there were, you know, unique issues coming up with appointments where I had to attend alone, I and the doctor, techs were all masked, things like that. And the first indication that something could potentially be wrong, but probably not, let's just get it checked out, was an elevated protein level in a blood test at my 16-week appointment. My doctor called and said, Hey, this protein level is a little high. Sometimes that can indicate a neural tube defect. Just to be extra sure, I'd like to book you in for an early anatomy scan with an MFM, a maternal fetal medicine specialist. I said, okay, I didn't love hearing that, but it felt like we're gonna get it checked out. This is something that could land on a spectrum. My doctor talked about, you know, there are folks out there with neural tube defects. You would never know, just looking at them or talking with them all the way up to, you know, a severe spino bifida diagnosis. And we have amazing things like fetal surgery where they can make repairs while the baby is still in utero. So I was really resting on the miracle of modern science and maybe nothing's wrong at all, and we'll just get it checked out. I did have to attend the appointment alone. Uh, I did advocate pretty hard for myself. I called the MFM and offered all of these creative solutions, like, could I go into the scan alone? But then maybe we sit outside and consult there. So my husband could be with us and we could be safe, or could he just come in for a little bit? And no, no, no, no, no. So I wasn't able to make that happen.

SPEAKER_00 11:37

It was such a weird time, wasn't it? It really was.

SPEAKER_01 11:41

Yes, it's crazy to think back on how much was so drastically different in that pandemic time. But when I went in for the appointment, um, I had my husband on speaker phone, which honestly, in retrospect, was pretty futile. I was masked, the tech, the doctor were masked, and he couldn't really hear us very well over speaker phone, but it was the one way I could feel like he was there with me and and hearing the same things that I was hearing.

SPEAKER_00 12:14

At the same time, too.

SPEAKER_01 12:16

Yes, and I wouldn't have to translate that or try to remember later during the scan. And anybody who's been in an ultrasound knows the ultrasound tech is not going to tell you diagnostics. They can't tell you that they're seeing something, you know, in particular, or it looks like this, they're gonna let the doctor talk about it. It was a long scan. I think it took about an hour, and I remember really trying to keep the mood, which was probably all about taking care of myself in that moment. I wasn't hearing from the ultrasound tech, you know, the cutesy, oh, you know, here's baby's profile, or let's see if we can get a picture. Oh, he's waving at you, you know, things like that that I'd heard before, which made me very nervous. I didn't know if it should be, but since then I've heard from a lot of folks that silence and an ultrasound was kind of a first indication that, okay, today's gonna be a tough day. Um we I remember in the scan noticing, you know, it's an ultrasound, it's grainy, baby looks like a squirrel or a dolphin or a tadpole. I don't know what I'm looking at. Yeah. But I do remember his feet. I couldn't figure out the orientation of his feet or what I was really looking at when she was scanning that. And I remember her spending a lot of time and having me move around into different positions trying to get a particular image of his back. And then after the scan was over, waited for what felt like an absolute eternity. It was probably 15 minutes or less for the doctor to come in. And he sat down and said, I'm afraid I have some bad news, and went into telling me more about what they had seen in the ultrasound. And I remember him using a lot of really big words that I didn't know what they meant.

SPEAKER_00 14:21

And your husband is on speaker this whole time.

Alone At Appointments During COVID

SPEAKER_01 14:24

Yes, trying to hear us through the masks we were wearing. And you know, I was sitting kind of far away from the doctor. I usually in my appointments took notes on my phone so I could remember what we discussed. And that's just me. I'm a note taker. I like being able to read back things that that happened, but I couldn't do that holding up the phone to the doctor so that Will, my husband, could hear. So I don't have any notes from that probably most crucial doctor's appointment of my entire life. Um, but what we learned in that appointment was that uh Frankie had myelomingocell spina bifida, which is the most severe form of spina bifida where the spinal cord is all the way through and protruding out of his back. The tension from that had caused hydrocephalus and ventriculomegal in his brain, which meant the ventricles were larger than they should be. It was pulling down on his brain stem. And then the doctor identified that he also had clubbed feet, which is often associated with spinobifida, and also explained why I couldn't picture his feet in the scan. So I remember in that moment coming back to that shock, I felt like the world had absolutely crumbled around me. I was trying to focus on what was going on, what was being said, because I knew how important it was. And at the same time, I was trying to absorb life as I know it is over. This baby I was waiting for and expecting is not healthy. I don't know what this means for us. Is he gonna be okay? Are we gonna be okay? And we set an appointment to come back two days later to do an amniocentesis to see if there was any genetic component to what was going on. And I remember getting to my car and absolutely crumbling. I think I was screaming, crying, and called my parents. And I don't know what I said. I just remember saying, it's not good, it's not good, and feeling like, what do we do now? You know, this isn't the story you have of pregnancy and that we have as a society is, you know, two lines on the pregnancy test, healthy living baby nine months later. And that is just not the case for everybody, but yeah, we don't talk about that. So um, yes, shock for sure was a big part of that experience on that day in particular, but happened several times throughout uh the experience of losing him.

Receiving The Diagnosis And Aftermath

SPEAKER_00 18:00

We're still in the midst of a global pandemic. Maybe we have some sense of the word that everyone was using back then, a sense of new normal, right? A sense of normalcy and what have you, but still, there's still all of this anxiety, all of this um uncertainty. So that's just the that's what's in the air. And then on top of that is discovering something so devastating and realizing, like you said, life uh as I knew it. I mean, so even speak about that in past tense, it just kind of shows how uh clearly delineated or demarcated rather the what life was before that ultrasound and what life has been since. They are just two completely different worlds. And I am every part of me is just uh I I feel so horrible for your husband who is experiencing all of that and he is on a speakerphone and not being able to to be in the room, to be there with his wife, to be there with his son and to ask his own questions. I mean he was on speaker, but then my God, how do you process all of that and and still have the wherewithal to to ask questions? If if you could take me into some of the conversations that you and your husband were having.

SPEAKER_03 19:41

Yeah.

SPEAKER_00 19:42

Now this thing is on the table. And how do you even begin talking about that?

SPEAKER_01 19:47

Part of what made those conversations so difficult was how little information we felt like we had. I know we both dove into a Google hole and started reading as much as we could about my lemon and Gacil Spina bifida. And I remember trying to spell that to, you know, some struggling. We uh I'll say absolutely ending the pregnancy was not a part of the conversation initially. I don't think either of us had a sense at that point that this was something for which we might consider ending the pregnancy. So it was a lot of, you know, we'd heard of spina bifida before, but I couldn't have told you, you know, what is life like for a kid growing up with spina bifida? Do kids grow up with spina bifida? They do. Is it fatal or non-fatal? Is it, you know, they talked about his spine and brain. Those are pretty important things. What does that impact? Um what does fetal surgery look like? And honestly, I think that was where we turned to a lot was okay, the doctor mentioned fetal surgery. There's a fabulous fetal surgery unit in Houston. We were in Austin at the time. Uh, our MFM had said in that appointment he had colleagues there and would be happy to refer us. So there was still some sense that, like, this is terrible and it's fixable. Like we're gonna be able to get to a place where there are challenges, but we'll figure this out. And I remember a lot of our conversations, I was focused 100% on Frankie. And my husband was able to pull in other variables. And I remember at the time I was really angry at him for worrying about other things. These were not unimportant things. He was worried about Worried about finances. What would it mean for us if we had a son with all of these special needs? What if we couldn't both work? What if we had all these expensive therapies we needed to enroll him in? What would it do to our marriage? And I remember thinking, who cares? Which is a terrible thing to say to your husband. And I'm so grateful now that he was thinking about these things that I couldn't.

Marriage Strain And Different Coping Styles

SPEAKER_00 22:35

I'll pause here for a second because I think this is such a valuable insight, particularly coming from you as the wife. Because for from my standpoint as a husband, I totally get it, because that's exactly where my mind has gone when I was in the midst of the losses that my wife and I experienced. Now, due to miscarriage, there wasn't necessarily the component of the financial worries or any of those things because we lost the baby. So we hadn't gotten as far as you or with the diagnosis in this in the context. Nonetheless, it was the sense of okay, things are falling apart here. And my responsibility is to hold things up. So how the heck am I gonna do that? We go into life like this. Because in the midst of those conversations, especially as you're having these intimate conversations, complex, difficult conversations with your partner, it can feel as though, oh, we're on two different planes. Yeah. Like you must not care about our child. You're always worrying about everything else. Do you even care about do you care about me? Do you care about us? And it's almost like the it's almost like the the the love language type situation where everyone has different love languages. And in that moment, it seems to me that it is not uncommon that for men, our love language in that moment is to talk about the details of how can I begin to prepare for life that includes this very difficult set of circumstances. And I don't know if there's a better way to express it in the moment, but the fact that you're saying that, and I'm like, oh yeah, that's what I did. Yes. That's what I did.

SPEAKER_01 25:08

It's it's it is so valuable, and it's so important like that. Our marriage surviving, of course, that's important to me. And of course that's and that is a priority. Like this is our family.

SPEAKER_02 25:24

Yeah.

SPEAKER_01 25:24

And in that moment, I was so tunnel vision. And again, at the time, I did not express appropriate gratitude for my husband's perspective.

SPEAKER_00 25:37

And neither were you expected to, right?

SPEAKER_01 25:40

No, I I mean, we were both just trying to keep heads above water and like survive the circumstances, as I'm sure you were and your wife were trying to figure out how do we get through this. I'm so grateful in that hindsight perspective that I mean, both of us were just doing what we needed to do to get through that time. And I know a lot of parents going through loss fear for the future of their relationship. You know, the there are a lot of stats around marriages and relationships falling apart after baby loss, after bringing a child into the world with complex medical needs. You know, there's just a lot of strain that goes on relationships in that way. And so those things weren't unimportant to me just for my survival at that time. What I was focused on was singular. And it was interesting as things evolved and as we learned more information, Will and I both ended up at the same place in our decision making, but from completely different perspectives. And that can feel scary when you don't feel like you're on the same page as your spouse or you're thinking about things differently that are so, I mean, central to your family and your future. And those that, you know, year following that loss and and beyond sometimes were really challenging in our marriage. And I'm grateful to say it's much improved and we're, you know, very close and connected and on the same page again. Um but it was a slog sometimes and and very lonely for both of us, I know. So it's if that's something folks listening have ever experienced, I hope they know that it's terrible and common, and it's okay to work through that, and it's okay if a relationship ends, but it's it's rough, is what I want to say.

Research, Fetal Surgery, And Hard Options

SPEAKER_00 27:48

Yeah, yeah. I want to go back to you stating that termination was not the first thing that you or Will decided you wanted to do. And I think that's a very important point to highlight. Because again, to people who may not have any exposure or the information that they've consumed is very muddled. It may feel as though oh yeah. A set of circumstances like this, yeah, of course, this is the very first thing that families are going to say, oh yeah, no, let's just go ahead and terminate the pregnancy. It's a lot more complex than that. So there is this impulse of no, we need to fight and do everything that we can in order to give Frankie a chance. I'm wondering if, because in my context, I come in contact with families who are also wrestling with a very difficult, complex set of circumstances. And the one thing that I often hear is this uh holding out for hope, but in the miracle language. So there is a a religious, there's a spiritual component that uh undergirds uh how someone processes through their decision making and miracle and and and God's ability to do or to not do, but in that particular case, he he better damn well doing.

SPEAKER_01 29:25

Yeah.

SPEAKER_00 29:26

Right. So did that play a factor or how do you see that sort of influencing the way these conversations are had?

SPEAKER_01 29:36

I I've actually thought about this before. I can't remember the first time termination was presented as an option. It might have been in just that next appointment at the amyocentesis. It might have been in that first appointment, and I just didn't hear it because I couldn't, or you know, whatever else. I also, in working with a lot of TFMR families in my own experience, hear this a lot of, you know, what if the doctors are wrong? I see these stories online of terrible diagnoses in pregnancy and babies born healthy, and they're six years old and starting school now. Yes. Or there's just not any information about this diagnosis because it's so rare. So does that mean, you know, could my baby be the one who makes it to adulthood for the first time? And I think what's behind that is the question, what does it say about me? Or what does it say about my parenthood if I don't give my baby the chance to be that miracle?

SPEAKER_00 30:44

Oh, yes. Yes.

SPEAKER_01 30:46

And that cuts deep, right? Like, yes, as parents, whether this is your first baby or you've parented living children or you have other losses, this is a parenting decision and one that is, I mean, the highest of stakes, right? So when there is a spirituality or religion or faith, I think part of why that comes up is because of those stakes. You know, this God must be involved in this life and death stuff, right? Um and if there's a miracle or if there isn't, and I would say most people don't like to entertain the idea that there isn't going to be a miracle, maybe there's a higher purpose for it. And some people get pissed off at the concept of a higher purpose or a reason for the death of their baby. And I understand that perspective too. But I think it has to do with that survival mode. You are trying to understand, you know, if folks are anything like me, where there's your world crumbled to dust in that moment where you learned your baby was sick. You're just trying to see through the fog and you're trying to understand what does it mean to live in this world where my baby can be so sick, or what does it mean to live in a world where my baby died and hers didn't? Or, you know, we have this here in the states, it's a very American idea that if I just work hard and I do the right things, I will get the outcome I'm aiming for.

SPEAKER_00 32:32

Absolutely.

Hope, Miracles, And Faith Tensions

SPEAKER_01 32:33

And that just doesn't work in family building. You can do everything right and you can struggle with infertility because it's a medical diagnosis. You can do everything right and still have an ovary that doesn't want to participate, or your sperm are not doing what they need to do. You can get pregnant and have losses and not know why. You can get pregnant and eat right and exercise and stay away from toxins, you know, whatever that means, and still find out at your 20-week anatomy scan that baby has some congenital anomaly or they're sick. We do not have the control that we think we do. And I think when we turn to spirituality or higher power or faith in those moments, it's seeking that sense of control or that sense of something beyond ourselves to help us understand a world we don't recognize anymore and that feels scary.

SPEAKER_00 33:38

Thank you for listening today. If you want to stay in the loop of what's going on at Dad Always, go to datalways.com to join the email list to receive updates. This podcast episode is dedicated to the ones we hoped for but never met. And the ones whose time with us was all too brief.