Transcript

The Due Time · Mom Wars

0:01
Speaker 1: From the front lines of the mom wars, here's Bethany
0:04
Speaker 1: Mandel and Cara Kennedy.
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Speaker 2: Hello and welcome to another episode of your favorite podcast.
0:13
Speaker 2: I am your host, Bethany Mandel, and I am joined
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Speaker 2: by an incredible woman who we've crossed professional paths for
0:22
Speaker 2: like 15 years now, I think. Helen Riley is a writer,
0:27
Speaker 2: an entrepreneur, and a speaker. And before I introduce Helen,
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Speaker 2: I want to just give sort of a trigger warning,
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Speaker 2: content warning for folks who are listening. We're going to
0:36
Speaker 2: talk in this episode about infant loss and miscarriage and
0:41
Speaker 2: stillbirth and very sensitive things that if that's not an
0:45
Speaker 2: episode that you want to consume, this is not the
0:48
Speaker 2: episode for you. And we love you and you should
0:50
Speaker 2: turn off. But if this is an episode that you're
0:53
Speaker 2: comfortable listening to, I'm glad that you're here. We're recording
0:57
Speaker 2: this in advance of September 19th, which is established as
1:01
Speaker 2: like an official day on the federal calendar as the
1:04
Speaker 2: National Stillbirth Awareness and Prevention Day. And that is why
1:08
Speaker 2: I have Helen on because we're having this conversation. And
1:12
Speaker 2: in addition to being a writer and entrepreneur and a speaker,
1:16
Speaker 2: she is also a lost mom. And so- I'm going
1:19
Speaker 2: to let Helen kind of steer the ship a little
1:20
Speaker 2: bit on the conversation because it's sensitive. It's sensitive for
1:25
Speaker 2: listeners and it's sensitive for participants. So Helen, thank you
1:28
Speaker 2: so much for coming on and talking about this. I
1:31
Speaker 2: know it's not easy, but I think that it will
1:33
Speaker 2: be helpful and informative for our listeners. So if you
1:37
Speaker 2: don't mind just sort of jumping in and sharing as
1:40
Speaker 2: much of your story as you're comfortable with, I'm all yours.
1:44
Speaker 3: Thank you, Bethany, for having me. Thank you for giving
1:46
Speaker 3: me a platform to discuss I'll share some personal experience,
1:50
Speaker 3: which I also believe is an important topic. It's overlooked,
1:54
Speaker 3: public health crisis. So let me first give you the
1:57
Speaker 3: medical definition of what a stillbirth is. So stillbirth is
2:01
Speaker 3: when a fetus died in mother's womb from 20 weeks
2:07
Speaker 3: gestation all the way until birth. So that's the definition
2:12
Speaker 3: of a stillbirth. Anything happened before the 20th week is
2:17
Speaker 3: considered miscarriage. So stillbirth is very different from miscarriage. It's
2:21
Speaker 3: important to have the definition out there. Stillbirth is one
2:24
Speaker 3: type of pregnancy loss. When we talk about stillbirth for
2:31
Speaker 3: many Americans, including myself, before this happened to me, I
2:35
Speaker 3: thought stillbirth is something that happened to our grandmothers' generation
2:40
Speaker 3: or the generation before. It only happened in places where
2:46
Speaker 3: people lack of basic health care. So it would never
2:50
Speaker 3: happen in some place like United States. And I know
2:53
Speaker 3: you're a mother of six children. And I remember when
2:57
Speaker 3: I was pregnant, I don't know if your experience during
3:00
Speaker 3: your pregnancy with all your children. I remember during my
3:03
Speaker 3: pregnancy with my first child, my doctor never mentioned during
3:08
Speaker 3: all my nine months prenatal checkup, he never mentioned a
3:12
Speaker 3: stillbirth risk to me. So my son was, so I
3:16
Speaker 3: had a relatively very healthy pregnancy until the very end.
3:20
Speaker 3: And the three, three days before my induction of, you know,
3:25
Speaker 3: before the doctor scheduled to induce my son, Lucas, it
3:28
Speaker 3: was at 39 weeks plus one day gestation. I had,
3:33
Speaker 3: I experienced a contraction, went to the hospital and unfortunately
3:38
Speaker 3: my son was born, was stillborn. So he died before
3:42
Speaker 3: he was born. And that was, That was considered term stillbirths,
3:46
Speaker 3: basically means, you know, your pregnancy passed the 37 weeks,
3:54
Speaker 3: which you consider full term, and then you lost your
3:56
Speaker 3: baby the last minute, which was very devastating when the
4:01
Speaker 3: doctor told us our son was stillborn. I couldn't comprehend
4:05
Speaker 3: what that mean, you know? So, and that, unfortunately, Since
4:11
Speaker 3: that loss, during my quest, searching for answers, I talked
4:15
Speaker 3: to parents in my support groups. Then it shocked me
4:19
Speaker 3: to find there's this upside down world out there that
4:23
Speaker 3: many parents experience something similar. And many of them, at
4:28
Speaker 3: least almost half of them, experience stillbirths close to term,
4:33
Speaker 3: just like I did. Yeah. And there's a Harvard paper
4:38
Speaker 3: I recently published a Harvard paper shows that about 40%
4:42
Speaker 3: of stillbirths happen to mothers who have had a relatively
4:49
Speaker 3: healthy pregnancy. So there was no symptom. And let me
4:53
Speaker 3: just give you one statistics, then I will stop, then
4:56
Speaker 3: you can ask me a question. So annually, United States,
4:59
Speaker 3: about 21,000 babies are stillborn, which is a big number.
5:04
Speaker 3: It's more than all different type of first-year infant deaths combined.
5:11
Speaker 3: It's definitely more than SID. And we heard about SID
5:15
Speaker 3: loss all the time, risk all the time. But none
5:19
Speaker 3: of us were told about stillbirth risk during our pregnancy.
5:23
Speaker 2: Do they have any idea what happened in your case
5:26
Speaker 2: or just in general, what can lead this to occur?
5:31
Speaker 3: Well, so for many parents, it was unexplained. Sometimes the
5:37
Speaker 3: doctors guess, like for example, if there's a cord accident,
5:41
Speaker 3: that can cause a stillbirth. But for all the parents
5:45
Speaker 3: we interviewed, for most of them, there was no symptom
5:48
Speaker 3: and there was no explanation what happened, what caused it.
5:53
Speaker 3: But there is a silver lining. Another research paper shows
5:57
Speaker 3: that at least 25% of stillbirths are preventable. And if
6:03
Speaker 3: it's close to term, then... the chances of us preventing
6:08
Speaker 3: silver can rise as high as 50% if it's close
6:13
Speaker 3: to term.
6:14
Speaker 1: How?
6:16
Speaker 3: Well, so close monitoring definitely makes a big difference. So
6:21
Speaker 3: the same Harvard paper I cited, the same professor, she's
6:25
Speaker 3: actually a behavior economist, but she's very good with statistics.
6:29
Speaker 2: Is this Emily Oster?
6:31
Speaker 3: No, it's Jessica Cowan. Oh, okay.
6:34
Speaker 2: Emily Oster is at Brown. Sorry.
6:36
Speaker 3: Yeah, it's okay. So I actually talked to Professor Cohen.
6:39
Speaker 3: So before she published this paper, she did another paper,
6:42
Speaker 3: basically study control. There are two groups, women just a
6:48
Speaker 3: few months above 35 years old when they were pregnant
6:52
Speaker 3: versus women just a few months younger than 35. The
6:56
Speaker 3: reason she choose 35 because according to the standard of care,
7:00
Speaker 3: if women's older than 35, then you automatically receive more
7:05
Speaker 3: monitoring because you are considered higher risk because of your age.
7:09
Speaker 3: And so she basically compared the two cohorts. One group
7:13
Speaker 3: of women just a few months above 35. Another group
7:17
Speaker 3: of women just a few months younger than 35. Yet
7:21
Speaker 3: she showed that the difference is drastic because women older
7:25
Speaker 3: than 35 receive drastically more, even though they're physically younger,
7:29
Speaker 3: you know, may not be that much difference and their age,
7:32
Speaker 3: you know, really just a few months difference. But because
7:34
Speaker 3: you receive more monitoring, close monitoring, the stillbirth, you know,
7:39
Speaker 3: for that group, it's, you know, it's basically comparable to
7:45
Speaker 3: the group that's younger or even in some cases lower.
7:49
Speaker 2: I remember seeing research in I think it was like
7:52
Speaker 2: 2020 2021 that indicated that there were a lot more
7:56
Speaker 2: stillbirths in like the peak sort of COVID. And I
8:01
Speaker 2: thought to myself at the time, I bet it's because
8:03
Speaker 2: there wasn't as adequate monitoring than it was virus related.
8:07
Speaker 2: Have you anecdotally read or heard anything sort of in
8:11
Speaker 2: your in your circle that would indicate if that hunch
8:15
Speaker 2: was correct?
8:17
Speaker 3: So definitely what I learned, you know, after talking to
8:21
Speaker 3: doctors as well as other lost moms, close monitoring helps.
8:25
Speaker 3: It doesn't prevent everything, but definitely close monitoring helps. What
8:30
Speaker 3: we encounter, the real barrier here are three things, three
8:34
Speaker 3: barriers that we're facing to address the stillbirth risk. One
8:38
Speaker 3: is culture. Because culturally, we're a culture all about being young,
8:43
Speaker 3: being alive. We're not good talking about you know, loss
8:47
Speaker 3: of infant or pregnancy loss. So, you know, that's one
8:51
Speaker 3: of the reasons why doctors avoid, you know, health providers
8:55
Speaker 3: avoid talking about stillbirth risk. Another thing is, another barrier
9:00
Speaker 3: is because this is a culture bias. Think all women,
9:05
Speaker 3: you know, pregnant women or think we're all hysterical, right?
9:08
Speaker 3: We're already hormonal. So I asked some doctors, they said
9:11
Speaker 3: the reason they don't want to talk about, discuss stillbirth
9:14
Speaker 3: risk is because They don't want to, you know, basically
9:18
Speaker 3: pregnancy is supposed to be a happy experience. They don't
9:20
Speaker 3: want to make us all upset for unnecessary reasons or,
9:24
Speaker 3: you know. That's kind of valid. It's kind of valid,
9:27
Speaker 3: but did the doctor talk to you about not eating
9:30
Speaker 3: soft cheese? Did the doctor talk about you not changing
9:34
Speaker 3: cat litters?
9:34
Speaker 2: Right, but I can do things about not eating soft cheese.
9:39
Speaker 3: Well, that's another thing. There are things we can do.
9:43
Speaker 3: That's the thing. There are things we can do. Let
9:46
Speaker 3: me give you an example. Fetal movement monitoring. I don't
9:50
Speaker 3: know if during your sixth pregnancy. Yeah, kick counts. I
9:54
Speaker 3: was not told about kick counts. My doctor asked me
9:58
Speaker 3: whether my baby moved. but he never even taught, you know,
10:02
Speaker 3: he never even taught me how to count the baby,
10:05
Speaker 3: you know, movement. Yeah, so, and it was my first pregnancy.
10:09
Speaker 3: So I didn't know, but now I know, you know,
10:13
Speaker 3: monitoring baby's movement, especially in the, you know, third trimester,
10:18
Speaker 3: is very very important because that's really one of the
10:22
Speaker 3: very very few ways the babies can send the mothers
10:25
Speaker 3: a warning signal something's not right right it's it's not
10:29
Speaker 3: exactly about the numbers of kicks it's really about the
10:32
Speaker 3: pattern that's what i learned and there's a group of
10:35
Speaker 3: five moms the iowa they based on a research from
10:39
Speaker 3: norway they developed this account the kick apps uh now
10:43
Speaker 3: is available in Dozens of languages. Anybody can download it
10:46
Speaker 3: for free. They institute this. They promote this first in Iowa.
10:51
Speaker 3: It's more than 10 years now. The state of Iowa
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Speaker 3: shows that the stillbirth rate, since they promote this app,
11:00
Speaker 3: the stillbirth rate in that state reduced by a third.
11:04
Speaker 2: That's significant.
11:05
Speaker 3: Exactly. So monitoring definitely helps. And here leads to another thing.
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Speaker 3: Another barrier is Many doctors and nurses, health care providers
11:15
Speaker 3: are now trained how to talk to patients about stillbirth
11:20
Speaker 3: risk and how to show parents to monitor without increased anxiety.
11:27
Speaker 3: So many times, even during the monitoring phase, if they're
11:32
Speaker 3: not trained how to discuss this, right? So sometimes the
11:35
Speaker 3: symptoms get explained away. You know, for example, you've probably
11:39
Speaker 3: heard that, you know, if you notice your baby movement
11:42
Speaker 3: slow down, if you call a midwife or a nurse,
11:46
Speaker 3: most likely they'll tell you, oh, just drink some orange
11:49
Speaker 3: juice or eat a chocolate or suck on ice. I mean,
11:52
Speaker 3: none of this actually is scientifically true, but they're still
11:56
Speaker 3: being told to moms. So now what the moms expecting
12:00
Speaker 3: mothers should know is if you notice your baby's, you know,
12:03
Speaker 3: movement pattern, not the number of kicks, but if they're
12:07
Speaker 3: If they're out of pattern, you know, you should not
12:09
Speaker 3: just accept drinking orange juice or sucking on ice, especially
12:14
Speaker 3: if you're late in your pregnancy. You should really go
12:18
Speaker 3: to the, you know, go to see your OBGYN and
12:20
Speaker 3: get a close monitor to make sure there's nothing else
12:23
Speaker 3: is wrong. Again, the movement is one of the very
12:27
Speaker 3: few ways the babies can send you distress signals that
12:31
Speaker 3: something's wrong. I remember during my pregnancy that because, you know,
12:36
Speaker 3: I was close to term You know, my doctor, he
12:38
Speaker 3: didn't tell me how to monitor baby's movement. And also,
12:42
Speaker 3: when Lucas's movement obviously slowed down, I was told, oh,
12:47
Speaker 3: you know, the baby ran out of room late in
12:51
Speaker 3: the womb, so they slowed down movement. Again, that's a
12:55
Speaker 3: misinformation that has been scientifically debunked. You know, research nowadays
13:01
Speaker 3: shows babies do not slow down. Even in the third trimester,
13:05
Speaker 3: they're moved. They may move differently because they run out
13:08
Speaker 3: of room, but they'll never slow down. If they significantly
13:11
Speaker 3: slow down, they barely move, that's a distress signal. You know,
13:16
Speaker 3: the parents should, again, don't drink orange juice, don't suck
13:20
Speaker 3: on ice. You really should go see your OBGYN and
13:24
Speaker 3: demand additional monitoring to make sure your baby's okay.
13:35
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14:01
Speaker 2: I mean, I struggle with that because I don't want
14:04
Speaker 2: people to be sort of consumed by anxiety at the
14:08
Speaker 2: same time. Like, I did notice my babies didn't move
14:11
Speaker 2: as much towards the end, although the night before they
14:14
Speaker 2: did do a crazy amount of movement. How can you
14:19
Speaker 2: sort of walk through pregnancy and be aware of these
14:23
Speaker 2: things without being filled with anxiety? Do you have any
14:26
Speaker 2: insights on that?
14:28
Speaker 3: There's actually research because other countries, for example, in Australia
14:32
Speaker 3: and the United Kingdom, they actually have public campaigns, you know,
14:36
Speaker 3: about the importance of monitoring fetal movement. And they actually
14:41
Speaker 3: mandate doctors to talk to their pregnant patient about, you know,
14:47
Speaker 3: the importance of monitoring baby movement. And the research, the
14:50
Speaker 3: follow-up study from those public campaigns shows it did not
14:54
Speaker 3: significantly increase mother's anxiety.
14:57
Speaker 2: Thank you.
14:58
Speaker 3: What increased anxiety is, you know, you know, what's really
15:02
Speaker 3: devastating is when you reach the 39 weeks, you don't
15:06
Speaker 3: get to bring a living baby home.
15:08
Speaker 2: Yeah.
15:09
Speaker 3: So that's the most devastating part. And that is why,
15:12
Speaker 3: that's one of the reasons why I'm producing this documentary
15:15
Speaker 3: about stillbirths. I'm not trying to promote one theory versus
15:22
Speaker 3: another theory, but I do believe knowledge is a power.
15:26
Speaker 3: I think women should, you know, should be giving all
15:29
Speaker 3: the information and have a joint effort with their health
15:34
Speaker 3: providers to have this more productive, you know, conversations. Ignorance
15:39
Speaker 3: during pregnancy is not a bliss.
15:42
Speaker 2: So share with me a little bit more about the
15:44
Speaker 2: documentary that you're putting together now, because we haven't really
15:47
Speaker 2: introduced it at all.
15:49
Speaker 3: Right. So there are very few, again, this is a
15:53
Speaker 3: very heavy subject. So there's definitely very few out there. But,
15:57
Speaker 3: you know, I learned this through talking to, you know,
16:01
Speaker 3: people in my community, the loss community, that one of
16:04
Speaker 3: the most powerful way to raise awareness is, you know,
16:07
Speaker 3: cause people nowadays, they don't read, they barely read, right?
16:10
Speaker 3: Their attention span is, you know, short. But a documentary,
16:14
Speaker 3: a film is much more powerful, effective way to help
16:17
Speaker 3: raise awareness. So we do believe awareness is key because again,
16:22
Speaker 3: I use SID as example. even though the numbers of
16:25
Speaker 3: babies die of SID is much, much lower on annual
16:28
Speaker 3: basis compared to stillbirths. But you get a SID that
16:32
Speaker 3: has been talked about all the time, right? When we
16:35
Speaker 3: go to see a doctor, when we're pregnant, the doctor
16:37
Speaker 3: will talk to us about the SID. Again, doctors, when
16:40
Speaker 3: they talk to us about the SID, they didn't worry
16:42
Speaker 3: about increased anxiety, this and that. You know, it's just
16:46
Speaker 3: the SID community, I mean, it's still devastating loss, but
16:49
Speaker 3: the community has been so successful in terms of raised
16:52
Speaker 3: public awareness. Now it's just become part of the practice
16:56
Speaker 3: that we all accept it. And that's what the stillbirth
17:00
Speaker 3: community tried to reach that. And so in this documentary,
17:04
Speaker 3: our goal is to raise awareness about not only about
17:07
Speaker 3: the stillbirth, but also about evidence-based medicine that have proven
17:12
Speaker 3: can help reduce like a preventable stillbirth. So I interviewed
17:17
Speaker 3: about 20 lost parents across four states, California, Colorado, Iowa
17:23
Speaker 3: and the Minnesota. And we also are in process interview
17:27
Speaker 3: medical experts. And so this film, what we want to
17:32
Speaker 3: focus out is not about the sob stories, even though
17:36
Speaker 3: it's a very sad and it's definitely very devastating experiences,
17:40
Speaker 3: but we also want to show that the parents, the
17:43
Speaker 3: lost parents are taking actions. They're not waiting for the
17:47
Speaker 3: system to change because system is too slow to change.
17:50
Speaker 3: So they're taking different actions to try to improve pregnancy
17:55
Speaker 3: outcome for other parents.
17:58
Speaker 2: Do you think that some of that difference in sort
18:02
Speaker 2: of acknowledgement of a SIDS loss versus a stillbirth is
18:07
Speaker 2: sort of a societal... I don't know how to describe
18:11
Speaker 2: it properly. I guess like a societal lessening of the
18:15
Speaker 2: importance of the unborn. Do you think that that has
18:17
Speaker 2: anything to do with why, you know, on one end
18:20
Speaker 2: of the womb versus the other, there seems to be
18:22
Speaker 2: more attention and more acknowledgement of that loss?
18:27
Speaker 3: Probably. I cannot say that definitely, but probably because, you know,
18:31
Speaker 3: stillbirths is babies die in a wound, right?
18:35
Speaker 2: Right.
18:35
Speaker 3: So most, it's only until recent years Cause one of
18:40
Speaker 3: the mom I interviewed, she lost her baby. Her baby
18:42
Speaker 3: was still born 20 years ago. She wasn't even allowed.
18:45
Speaker 3: She wasn't even allowed to, to, to see her baby. Yeah.
18:50
Speaker 3: Or hold her baby because 20 years ago, it's just like,
18:53
Speaker 3: you know, doctor just told her you're still young. You
18:55
Speaker 3: can have another one. Like you don't want to see this. Right.
18:58
Speaker 3: So it's pretty recent, the practice. Now more hospitals are
19:02
Speaker 3: getting better that they allow lost parents to see and
19:05
Speaker 3: hold their baby to spend some time with them. But still,
19:09
Speaker 3: The rest of the family and your relatives, your friends
19:12
Speaker 3: never get to meet the baby, right? So to them,
19:15
Speaker 3: it's a very empty concept. But for Sid, you brought
19:19
Speaker 3: a living, crying baby home. So people who are important
19:23
Speaker 3: to you get to see it. So I do believe
19:26
Speaker 3: that does make a big difference for the community.
19:31
Speaker 2: Yeah. I wonder if, you know, God forbid one of
19:36
Speaker 2: our listeners... in five years has a best friend who
19:40
Speaker 2: experiences this. Obviously, the mom is not in an emotional,
19:45
Speaker 2: mental position to sort of self-advocate and to think about things.
19:51
Speaker 2: One of my examples is one of my best friends
19:54
Speaker 2: lost someone very close to her and I suggested, you know,
19:57
Speaker 2: have people take pictures at the funeral so that you
19:59
Speaker 2: remember who was there because you're not going to be
20:01
Speaker 2: there in the moment. Your brain is not going to
20:03
Speaker 2: be functional. So if anyone is sort of listening and then,
20:07
Speaker 2: God forbid, has this experience, experience in their social circle,
20:11
Speaker 2: what should they encourage their friend or loved one to
20:14
Speaker 2: do if they're in this circumstance? And you just mentioned,
20:16
Speaker 2: you know, being with the child. Do you have any
20:20
Speaker 2: insights into, you know, the loss community, what they did
20:23
Speaker 2: and were glad they did? What if something that they
20:26
Speaker 2: perhaps wished they had done?
20:27
Speaker 3: Yeah, so a couple of, I have a couple of suggestions. Definitely.
20:32
Speaker 3: I'm so glad you asked about this because our culture, again,
20:35
Speaker 3: is so poor, so bad at talking about the loss,
20:39
Speaker 3: especially when it comes to an infant. So if you
20:41
Speaker 3: are a friend, you know, ask the lost parents what's
20:45
Speaker 3: your baby's name, mentioning their name. Don't just refer to
20:49
Speaker 3: it as a fetus. You know, all of us name
20:52
Speaker 3: our child. So ask them what some child's name is.
20:56
Speaker 3: You know, remember the child's birthday. And also for the,
21:00
Speaker 3: you know, depends on where they gave the birth, make
21:03
Speaker 3: sure that the place provides some time and space to
21:07
Speaker 3: allow the lost parents and sometimes you can include a
21:10
Speaker 3: sibling as well as grandparents to spend some time with
21:14
Speaker 3: that baby because that's the only time they get to
21:18
Speaker 3: have you know and also here's another thing is um
21:22
Speaker 3: uh when when a stillborn child especially is close to
21:25
Speaker 3: term a stillborn child look just like a baby in
21:30
Speaker 3: sleep yeah so it's not you know um I know
21:35
Speaker 3: many parents get you like, you know, bathing them, changing
21:38
Speaker 3: clothes as some of them take them out, just experience
21:42
Speaker 3: the sunlight a little bit. Just, just have that moment
21:45
Speaker 3: to have that time together because they're never going to
21:48
Speaker 3: get you. People like me, we never get to hold
21:50
Speaker 3: our children again. So, so that space and time is very,
21:53
Speaker 3: very important. And, and then do not there. Here's, here's
21:58
Speaker 3: a bunch of things to do not say, even, even
22:01
Speaker 3: the mother still young. never tell her that you're going
22:04
Speaker 3: to have another one, you know, because one child is
22:08
Speaker 3: not a replacement of another child. And that's the last
22:12
Speaker 3: thing they need to hear when they experience a devastating loss.
22:16
Speaker 3: If you do not know what to say, just tell them,
22:19
Speaker 3: I don't know what to say, but I'm here to listen.
22:23
Speaker 2: Okay.
22:24
Speaker 3: And also taking pictures, there are some non-profit organizations offer
22:29
Speaker 3: to take portraits, family portraits of both the baby as
22:33
Speaker 3: well as parents with the baby. Like in my case,
22:36
Speaker 3: my parents get to hold Lucas too. And we have
22:41
Speaker 3: grandparents' pictures as well. Like I actually talked to a
22:45
Speaker 3: photographer who volunteered. She took more than 200 babies here
22:50
Speaker 3: in Denver. She took more than 200 babies who are stillborn.
22:54
Speaker 3: And so I asked her about her experience, you know,
22:57
Speaker 3: for the film. And she said that some parents like
23:01
Speaker 3: didn't understand and initially really upset because they didn't want
23:05
Speaker 3: the picture. So she said that instead of walk away,
23:09
Speaker 3: she really tried to meet them where they are, but
23:12
Speaker 3: she would not leave because she tried to make the
23:14
Speaker 3: parents understand. Maybe you don't want the picture now because
23:18
Speaker 3: you're so devastated, but down the road, when you don't
23:22
Speaker 3: get to hold your baby anymore, those pictures are the
23:25
Speaker 3: only things you have, right? So- So you want to
23:29
Speaker 3: have the picture, even though at the moment you don't
23:32
Speaker 3: want the picture, but later on you want the picture.
23:34
Speaker 3: So good photographer will have the patience, try to work
23:39
Speaker 3: with the parents. Don't just walk away because we couldn't
23:42
Speaker 3: think right. You know, we couldn't think straight during that moment.
23:46
Speaker 3: Another thing I would encourage them to think about is autopsy. Because,
23:52
Speaker 3: you know, I remember when, well, here's the training part.
23:56
Speaker 3: Most doctors and health providers, I remember in my experience,
24:00
Speaker 3: right after we lost Lucas, we were still in shock.
24:03
Speaker 3: And somebody walked in to ask me if we want
24:05
Speaker 3: to do autopsy. My immediate reaction is no, because I
24:10
Speaker 3: feel like my baby has suffered enough. I don't want
24:12
Speaker 3: him to suffer again. And nobody explained to me what
24:15
Speaker 3: the infant autopsy was and how much it would help.
24:19
Speaker 3: But now, after I talked to other lost parents, as
24:22
Speaker 3: well as learned from researchers, Infant autopsy is actually very minimal,
24:26
Speaker 3: like invasive. It does not have to be invasive at all,
24:31
Speaker 3: but it's tremendously helpful, especially if the parents want to
24:35
Speaker 3: find out why, you know, the autopsy will help. And
24:40
Speaker 3: if they want to have subsequent pregnancy, that autopsy really
24:45
Speaker 3: can provide a lot of information. So I would advise
24:48
Speaker 3: the health providers maybe Don't throw out the autopsy question
24:54
Speaker 3: too soon. And also offer some explanation what it's going
24:58
Speaker 3: to be like. Like I said, it's minimally invasive. And
25:02
Speaker 3: then give the parents some time to process their grief
25:06
Speaker 3: and also help them to explain the benefits down the road.
25:11
Speaker 3: So once they do that, because we need the data, right?
25:14
Speaker 3: We want to prevent this from happening or reduce the
25:18
Speaker 3: chance for this happening. And those medical data are really
25:23
Speaker 3: going to help. But it can only happen when the
25:26
Speaker 3: parents agree to it. So those are just a couple
25:30
Speaker 3: of my suggestions. You know, the timing, be present. You know,
25:34
Speaker 3: like if you don't know what to say, just listen. Or,
25:38
Speaker 3: you know, help them do some housework. You know, like
25:42
Speaker 3: walk the dog, do the dishes. Because the last thing
25:45
Speaker 3: they want is, you know, moving on. And you can
25:49
Speaker 3: help them. you know, just to help them move along.
25:53
Speaker 3: Don't say move on or don't say move forward either.
25:57
Speaker 3: Just help them move, you know, move along.
26:00
Speaker 2: Keep functioning.
26:01
Speaker 3: Yeah, keep functioning. Yes, definitely keep them functioning. I remember, oh,
26:05
Speaker 3: another thing I really, really want the people to know
26:07
Speaker 3: is many of us think grief is just about emotion.
26:12
Speaker 3: It's just an emotional challenge. Grief is actually very physically
26:16
Speaker 3: challenging too.
26:18
Speaker 2: Yeah.
26:19
Speaker 3: It doesn't matter whether you lost a child or you
26:21
Speaker 3: lost a loved one, like older. Grief can be very
26:25
Speaker 3: physically challenging. So physical activities such as go out for
26:29
Speaker 3: a walk, you know, doing something, be under sunlight is
26:34
Speaker 3: actually really, really helpful.
26:36
Speaker 2: Yeah.
26:37
Speaker 3: Yeah. So, so, yeah. So if you don't know what,
26:39
Speaker 3: like as a friend, if you don't now know what
26:41
Speaker 3: you say and, you know, if you, if you don't
26:45
Speaker 3: know how to help them with, you know, housework, offer
26:48
Speaker 3: to take them out for a walk, you know, even
26:50
Speaker 3: a short one. Going to the nature does help because
26:54
Speaker 3: grief is as much of, you know, one of the
26:57
Speaker 3: mom told me, is there something called a grief hangover? Because, yeah,
27:01
Speaker 3: because you're grieving so much. I remember like in Lucas's
27:06
Speaker 3: birthday this year, even though it's eight years has passed,
27:10
Speaker 3: but during his birthday this year, I lost my voice
27:15
Speaker 3: for three days. I just like, I couldn't totally, I
27:20
Speaker 3: couldn't talk at all. It has never happened to me before.
27:25
Speaker 3: And the really weird part was the last time I
27:28
Speaker 3: lost voice was when he was stillborn.
27:31
Speaker 2: Oh, wow.
27:33
Speaker 3: Yeah.
27:34
Speaker 2: And it's, I mean, it's incredible. Even at eight years later,
27:36
Speaker 2: you're feeling those physical effects. It doesn't, it doesn't go away.
27:40
Speaker 2: I have a friend who lost her mom. The one
27:44
Speaker 2: year anniversary is coming up very soon. And my mom
27:46
Speaker 2: passed away. 24 years ago now and i was trying
27:52
Speaker 2: to think of something encouraging to say to her like
27:56
Speaker 2: the best i could do is like it doesn't get
27:57
Speaker 2: any better because it does it does get better but
28:01
Speaker 2: it doesn't at the same time.
28:04
Speaker 3: Yeah so one of the mom we interviewed so it's
28:07
Speaker 3: like it's a whirlpool you know it it's not a
28:11
Speaker 3: grief is not a straight line like like all this
28:15
Speaker 3: stage they described Yeah, you go through them, but it's
28:18
Speaker 3: not like you go through them once and it's over.
28:21
Speaker 3: Sometimes you go through some of them repetitively and they
28:23
Speaker 3: don't always go in the order too. And so, and
28:27
Speaker 3: it does happen at the moment that hits you the worst.
28:31
Speaker 3: Another thing, you know, going forward as a friend, something
28:35
Speaker 3: you can do is remember the baby's birthday. You know,
28:38
Speaker 3: even a text message on the baby's birthday, let the
28:41
Speaker 3: parents know you remember their child, you know, mention their name.
28:45
Speaker 3: And the thinking of them must make a big difference
28:48
Speaker 3: because most of us, you know, when the loss just happened,
28:51
Speaker 3: everybody's surround you. Everybody wants to provide support.
28:54
Speaker 2: Right.
28:55
Speaker 3: But after the funeral, you know, after a while, other
28:58
Speaker 3: people just, you know, they move down, they expect you
29:00
Speaker 3: to move on. But especially when you lost a child,
29:04
Speaker 3: like you're walking, you're leaving a future that they don't
29:07
Speaker 3: get to live. So you can't move on. And when
29:11
Speaker 3: other people already left, when you as a good friend,
29:14
Speaker 3: you know, show up once in a while to say, hey,
29:17
Speaker 3: I still remember you experienced loss. That just meant tremendously.
29:21
Speaker 3: That means so much for the parents knowing that their
29:25
Speaker 3: baby is not just one of the statistics. It's actually,
29:29
Speaker 3: it's a human being lived and somebody else remembered. Yeah.
29:34
Speaker 2: I was at a funeral for a child a couple
29:38
Speaker 2: of years, I guess it was a year and a
29:39
Speaker 2: half ago. The funeral was on Mother's Day, which was horrifying.
29:44
Speaker 2: And it was a little girl who died in an accident.
29:47
Speaker 2: And I was in, so in Jewish tradition, you bury
29:51
Speaker 2: as quickly as possible. And so in our local cemetery,
29:55
Speaker 2: there's a children's section because Everyone, you know, when you're
29:59
Speaker 2: 80 years old, you have your plot and everything, but
30:01
Speaker 2: there's a section for children for like the parents didn't
30:05
Speaker 2: have a plan to bury their two year old or,
30:07
Speaker 2: you know. And so there's an area of just children. And,
30:11
Speaker 2: and I walked through that area at this funeral and
30:15
Speaker 2: I was really struck by how many of the graves
30:19
Speaker 2: that have children I knew, I knew the families and,
30:22
Speaker 2: you know, it's, you can, it indicates on the, you know,
30:25
Speaker 2: born and died on the same day, you know, it
30:26
Speaker 2: was a stillbirth. And I really wavered on, I, there
30:31
Speaker 2: was a couple of women I didn't know that they
30:33
Speaker 2: had experienced at stillbirth. And I really wavered on, should
30:36
Speaker 2: I say something like, this was four years ago, this
30:39
Speaker 2: was seven years ago. And I decided to, I decided
30:44
Speaker 2: to say to a couple of them, cause a lot
30:46
Speaker 2: of these moms didn't come to this funeral for obvious reasons. And,
30:49
Speaker 2: and I said, you know, I stumbled upon Miriam's grave.
30:54
Speaker 2: I didn't know that that was something that you experienced.
30:56
Speaker 2: And I, I thought of you and I thought of
30:58
Speaker 2: her and I was like really on the fence if
31:00
Speaker 2: I should do that. But every single, I mean, I
31:04
Speaker 2: said it to three different women and, And all three
31:06
Speaker 2: of them were appreciative and they were glad that someone
31:09
Speaker 2: was there and stood there and remembered their child. But
31:13
Speaker 2: I was really struck in that moment, in that, in that,
31:17
Speaker 2: in that cemetery, realizing how many people that like, I
31:20
Speaker 2: see her at the supermarket all the time. I had
31:22
Speaker 2: no idea that she had experienced this and it was,
31:25
Speaker 2: it was really eyeopening and very sad.
31:27
Speaker 3: It is. And I'm so glad you did it. And I,
31:32
Speaker 3: You know, I get it. I get why other moms
31:35
Speaker 3: are so appreciative. Because if you say that to me,
31:38
Speaker 3: I will appreciate it too. Because again, a mother never
31:42
Speaker 3: move forward. If you lost a child, you never move forward.
31:45
Speaker 3: You always remember your child. And you will always appreciate
31:49
Speaker 3: anyone who also remember your child, mention your child's name
31:53
Speaker 3: and told you that, you know, yeah. And in the
31:57
Speaker 3: cemetery where we buried Lucas, There's also an area just
32:02
Speaker 3: for babies. It's called the baby land, which is the
32:05
Speaker 3: saddest area in the cemetery. But it's also the most
32:09
Speaker 3: decorated area. Like every holiday, whether it's Christmas or Halloween,
32:15
Speaker 3: and the parents go all out. It's the most colorful,
32:19
Speaker 3: most decorated area. That just shows you that the parents
32:23
Speaker 3: never forget. So they will appreciate their friends who won't
32:27
Speaker 3: forget either.
32:28
Speaker 2: It's so interesting though, because, you know, in my family,
32:32
Speaker 2: we had like a family plot and we were, we
32:36
Speaker 2: were fixing someone's headstone. And, you know, it was like
32:38
Speaker 2: a whole family conversation of like, we all went in
32:41
Speaker 2: on the headstone. Like it's not as fun to, you know,
32:44
Speaker 2: go all in on the, on the dinner is to
32:46
Speaker 2: go all in on the headstone repair. Um, and we,
32:49
Speaker 2: I pulled the records for the entire Horowitz family plot.
32:54
Speaker 2: And I found out that there was a baby in,
32:58
Speaker 2: in the plot. And we had never, no one had
33:01
Speaker 2: any idea. Um, and it was a stillborn baby. Maybe
33:04
Speaker 2: it was like, maybe the baby was a day or
33:06
Speaker 2: two old actually, now that I'm thinking of it. Um,
33:09
Speaker 2: But this was something that no one in the family knew.
33:12
Speaker 2: Has it changed, you know, in your sort of research
33:18
Speaker 2: of all of these sorts of losses? Was there a
33:21
Speaker 2: time when this was just absolutely not spoken about and
33:25
Speaker 2: something has shifted? Or was that okay?
33:27
Speaker 3: Yeah, even 20 years ago, like one mom I interviewed
33:30
Speaker 3: that she said that 20 years ago, the doctors basically
33:33
Speaker 3: would not let her see the baby. And a nurse
33:37
Speaker 3: took her picture, and that's all she had. She never
33:40
Speaker 3: got to see the baby. And some other older women
33:44
Speaker 3: we interviewed, they basically just said, we never talk about it.
33:49
Speaker 3: We were just told, you know, you should just move on.
33:51
Speaker 3: You're young enough. You're going to have another one. Like
33:53
Speaker 3: all the inappropriate things to say to a mom, just
33:57
Speaker 3: experience loss. Those were women's experiences. But now that culture
34:02
Speaker 3: is slowly changing. You know, I see more women come
34:06
Speaker 3: forward after the loss to share the loss more publicly.
34:11
Speaker 3: But even for me, like, you know, I lost Lucas,
34:14
Speaker 3: you know, we lost Lucas eight years ago, but I
34:17
Speaker 3: did not talk about it publicly until now because I'm
34:21
Speaker 3: doing this film, this documentary. But even for me, you know,
34:25
Speaker 3: it was just something like, it's a loss that I
34:28
Speaker 3: buried deeply in my heart. Like I endured it silently,
34:31
Speaker 3: but I didn't just go out there, you know, share it.
34:35
Speaker 3: It's just not me. Like, you know, but at the
34:37
Speaker 3: same time, now I realize that the only thing we
34:40
Speaker 3: can change the culture, we can bring more awareness is
34:44
Speaker 3: for more lost parents, you know, to talk about this,
34:48
Speaker 3: to let people know this happened way too often and
34:51
Speaker 3: there are ways to reduce it. So we need to
34:54
Speaker 3: talk about prevention and, we need to raise awareness so
34:57
Speaker 3: this can happen less.
34:59
Speaker 2: Yeah, absolutely. So where can folks go to find out
35:03
Speaker 2: more about your work in this realm and also the
35:07
Speaker 2: documentary that you're working on?
35:09
Speaker 3: The website, so the film is called The Due Time. Basically,
35:13
Speaker 3: because we draw the meaning that the United States is
35:16
Speaker 3: the past due time to address the stillbirth crisis. So
35:20
Speaker 3: the website is thedewtime.org. So T H E D U
35:26
Speaker 3: E time.com.
35:28
Speaker 2: Great. Um, thank you so much for coming on and
35:31
Speaker 2: sharing all of this. I know it's, it's not an
35:33
Speaker 2: easy conversation and I'm, I'm so appreciative of the difficult,
35:37
Speaker 2: but necessary work that you're doing. I think that, I
35:40
Speaker 2: think that you're going to change some lives and I
35:42
Speaker 2: appreciate everything that you're doing. Thank you.
35:45
Speaker 3: Thank you for having me. Yeah.
35:47
Speaker 2: Um, until next time guys, don't forget to hit subscribe
35:51
Speaker 2: and leave a review and And don't forget, saddle up.
36:02
Speaker 3: Ricochet.
36:04
Speaker 1: Join the conversation.