SUMMARY KEYWORDS
baby, loss, pregnancy, grief, pregnant, parents, people, group, children, parenting, siblings, families, utero, mom, mother, book, unborn baby, research, physicians
SPEAKERS
Speaker 2 (67%), Speaker 1 (31%)
1
Speaker 1
0:03
This is Pushing Boundaries, a podcast about Pioneering Research, Breakthrough Discoveries and Unconventional Ideas. I am your host Dr. Thomas R Verny.
My guest today is Dr. Joann O’Leary, who holds a Masters Degree in Maternal-Child Health from the University of MN and a Masters in Psychology from Queens University in Belfast, Northern Ireland. Joann has published 5 books including
Different Baby, Different Story: Pregnancy and Parenting after Loss
2020
Meeting the Needs of Parents Pregnant and Parenting After Perinatal Loss
2016
Pregnancy After Loss: A Descriptive Phenomenological Study Of Parenting A Subsequent Baby Following A Perinatal Loss
2010
After Loss: Parenting in the Next Pregnancy: A Manual for Professionals Working With Families in Pregnancy Following Loss
1998
A parent involvement program for preschool children with special needs
1978
Joann does research and writing on prenatal parenting, and the impact on parents and siblings and on the child born after the loss of a baby. We have not seen each other for a very long time. Joanna?
Right.
Joanne does research and writing about prenatal parenting and the impact on parents and siblings and on the child born after the loss of a baby.. So this has been I guess your main focus of work now for how many years?
1:46
Oh gosh. over 35 years, right? Yes, right. First I was doing groups at a high risk perinatal center. Right. And now I do groups for Star Legacy Foundation.
1
Speaker 1
2:04
Okay. Tell me about Star Legacy Foundation. What is that all about?
2
Speaker 2
2:09
That is a nonprofit that originally was started by a bereaved mother who had her first son stillborn. And the focus is on research and education to prevent perinatal loss.
1
Speaker 1
2:24
And so, do you do group work there or individual work or both?
2
Speaker 2
2:29
I do a weekly pregnancy after loss group. I do a once a month grandparent group, which is amazing for the brave grandparents. And then I do a small, twice a month group for families raising children after a loss.
1
Speaker 1
2:50
You said 35 years so what was it 35 years ago that sort of motivated you to get into this area?
2
Speaker 2
2:59
Well, you know, my PhD is in family education. So I came into the medical setting with a very focused developmental approach to children. And when I saw the childbirth educators teaching psychosocial tasks of pregnancy, I thought, first of all, I thought they are only preparing them for a day in their life, not the lifelong process. And coming from the special education community, they also weren't preparing them for families, so have an unexpected outcome. Right? And I thought what they were calling psychosocial, were really how old the unborn baby was in utero. That that's the unborn baby, right, that dropped right, wives parents, right and changing their behavior. And then when I watched Claire Tharwa, who was the antenatal testing nurse at the time, do biophysical profiles, I said to her, I think you do prenatally, what I do postpartum when I go over the Brazelton neonatal assessment with families. And so that's kind of how we developed our first model of prenatal parenting.
And then when Linda Parker and I, who was one of the nurses I worked with did our first pregnancy after loss group. We were going to do it twice a month, like most infant loss group, but the parents were like, Oh, my God, we can't wait another two weeks. We want to come next week too. And when they left Linda being the clinical nurse specialist said did you see all those moms with high risk pregnancies? And I said, did you see all those babies with attachment disorders because I envisioned all these little babies in there, saying I'm here, I'm here, because the moms weren't paying attention, they were afraid to embrace this new baby. And so that's kind of how our program started.
It's really showing pregnant parents after a loss how they could still be parents to their deceased baby while working to embrace this new unborn baby.
1
Speaker 1
5:30
So the mothers that you see, are they just after the loss? Or are they already pregnant with their second baby after the first one was lost?
2
Speaker 2
5:43
They're pregnant with their second babies. Okay, so they,
so they don't come after you to help them grieve for the loss.
2
Speaker 2
5:52
Oh, that's an interesting question. And you work with grief and attachment at the same time? Because it's a whole new layer of grief when they're pregnant again, because they think they're going to be so excited to have this baby, be pregnant again. And in fact, it just brings up Oh, my God, this baby could die too.
1
Speaker 1
6:17
Sure. I understand that. Yes. But I'm going back a little bit before that, like before they become pregnant because they don't become pregnant right after the loss. Right.
2
Speaker 2
6:28
Some do. But yeah, you're right. I only work with them in the next pregnancy isn't
1
Speaker 1
6:32
next pregnancy, right? So it's interesting to me that these women would not seek these women and their partners, I imagine that they don't think of perhaps seeing a professional person to grieve the loss of their child.
2
Speaker 2
6:56
No star legacy has an infant loss group to for them. Oh, they do? Yes. And honestly, the parent the fathers, too, because I did my research, with fathers separately from mothers are just too scared. And just as afraid to attach, I have some really amazing videos of fathers talking about their struggle of will I love this baby. As much as you know, my love my first babies. So you work with the dads too.
1
Speaker 1
7:28
So how do you deal with that? How do you deal with that kind of a question?
2
Speaker 2
7:34
Well, first of all, I I always say, anytime you're somebody with a healthy first baby, always thinks I'll never love another child as much as this one, right? So you try to help them see some of those feelings are normal. And that's okay. And then the other thing I focus is that just remember that your deceased baby, during like sick at 16 weeks gestation, also knew you as a dad, or a mom also heard your voices. And so you're almost always bringing in the deceased baby along with trying to nurture them to trust that this baby's going to come to
1
Speaker 1
8:23
Have you have you noticed a difference between how parents react to a loss during pregnancy and how they react to a stillbirth? Or a birth or a child that dies? Within a couple of days after birth? Is there a difference?
2
Speaker 2
8:41
I haven't seen a difference. We've had all sorts of types of losses. And now it's the same journey. They are afraid. They're afraid to attach and families and friends can understand why they're not happy now, why they're still grieving, right? It's very developmental, you don't know until you get there that it's going to be another layer of grief.
1
Speaker 1
9:10
Right? So for how long then? Is there a set time limit? Like do you have sort of groups for six weeks? Or is it open ended?
2
Speaker 2
9:20
You know what, that's a good question. It's very open ended. There is no set structure. As far as tonight we're going to talk about anxiety, because everybody every week has something different that they need to process, right. And so it's open ended and the people at say, someone that's 32 weeks and someone that's just joined that's nine weeks, who was in different phase will say, Oh, you're gonna be okay. I felt that way too. So the group process really helps each other I understand that what they're feeling is normal. And they're all going to be afraid to that babies in their arms crying, and it's okay. And it's okay to love this baby coming to.
10:14
So, a lot of reassurance.
10:17
Yes, yes. Really hard.
1
Speaker 1
10:22
Yeah. Yeah. Yeah. Yeah. Do you think that you have influenced physicians attitudes towards pregnancy and pregnancy loss? Because bye bye. What I mean by that is that physicians usually are just interested in the physical aspects. Okay, is this baby healthy? How much does it weigh? You know, what is the Apgar score stuff like that? And they don't give a hoot about the psychological emotional aspects of pregnancy and births? You obviously do. So I'm just wondering, have you had sort of a positive, growth effect on physicians in your neighborhood?
2
Speaker 2
11:12
I wish I could say yes. But I'm afraid I can't. So the perinatologist that I worked with, they always still thought I did a grief group. Right? They never understood that it was a group to build attachment. Right. And we have very, very few physicians that come to our presentations. Very few. So star legacy has been really good at trying to pull in people. But no, but that's what's so great about working with the two nurses that I worked with, because we integrated the medical, the prenatal parenting model into the medical right aspect of it. So we, I could never have really developed this model of care without Claire and Linda also showing me the medical piece of it. Yeah,
1
Speaker 1
12:10
of course. Yes. Yes. Yes. You have spoken about embodied grief after the loss of a baby. Could you explain that? What do you mean by that?
2
Speaker 2
12:23
Well, I wish I could quote the article that I found that in, but it's so true that grief stays in your body. And so when I was at the hospital, we used to do a small session before the group started for the moms that wanted to come early, that did a guided imagery, relaxation, and made a CD parenting your baby before birth. Right? And because they need to, including dads, I mean, I just interviewed a dad a couple months ago, who has so much trauma from the loss and so afraid in the next pregnancy. And we talked about getting therapy because I am not a therapist, I'm very clear, not a therapist, but finding someone to help them release that trauma through massage some kind of intervention. Yes, bodywork. Yeah. And it will you'll be interested in knowing I interviewed three Somali women when I was working on my PhD. Yeah. And trying to find out their culture. And after about 20 minutes this one mom said, Why do you keep asking us the same question only in a different way. We told you, it's God's will. It's God's will. And I said, Yes, but what happens to your emotions? And finally one of them started talking about her stillbirth, and she started crying. And she said how it impacted her husband. And then she ended it with what it's God's will.
1
Speaker 1
14:05
Right. So. Okay, it's God's will? Yes, yes. Yes. My goodness. So let's leave God out of it for a second. But was there anything in your own background that you think contributed to your interest in this subject?
2
Speaker 2
14:25
Well, I think part of it was coming from the special education community of birth to five program. Oh, yes, yes. Where I, you know, worked with the babies. I also know that enjoying some of my own free birth work with Liam Emerson, that my older sister was really mad. My mom was pregnant with me. And she never liked me all while she was growing up. And I realized that It was a memory from the crib, that she would leave with my mother and they'd leave me. So I always think about and talk to the parents about your baby's already here. And I always say to people don't ask ask women. How old is your baby? Not when is your baby do? Right? Because I think that would help prevent stillbirths, because in a normal pregnancy, nobody thinks about stillbirth. And they don't talk about it. Very few people talk about it in the medical community, yet they do talk about it. And a pediatric community doesn't sit, but they don't talk about. You could also have a stillbirth. And every night after my group, every week, we end the group by saying an affirmation for the baby that's there. And I always I start with the youngest pregnant person. And say, six weeks gestation, here's an affirmation for your baby. And go all the way up because I remind them all of your babies are listening. And all of your babies understand why you're so anxious. It's not because they're not wanted. It's because they wanted so much.
16:28
Very good. Yes, yes. Very good.
2
Speaker 2
16:31
And that's hard. I mean, long, long just said to me when she first started, I don't want to tell you how many weeks pregnant I am. I'll just tell you, I mean, the second trimester, okay. And so at the end of the night, when she realized I needed to know how old her baby was, she told me and another mom said, Yeah, you know, when you started that, I would put my hands over my ears and say, no, no, no, I don't want to know, because they can think, Okay, I'm pregnant, but not that there's a baby in sight. Right. But then she said, But I realized every week, it's helping me know more about my baby. And more that yes, the baby is already here.
1
Speaker 1
17:13
Good. Good. Have you had any chance of follow up to see how the kids are doing? who were born after the pregnancy loss?
2
Speaker 2
17:25
You know, that's a good question. I'm writing another book was Sarah Bowman. And it's called siblings raised in the shadow of grief. That's exactly it. Yes. And I have been able to interview a lot of these kids that are now in their 20s, talking about who they are. And of course, the parents and all parents think their children are wonderful. But even the teachers tell them how wonderful they are. So I truly know that the babies that have been in our groups are different people. They're sensitive, caring. And I also tell them moms, and the dads that are in my groups, now, your baby learns about grief in utero. Because we know from the research on stress during the mother's pregnancy, that they're picking up on these feelings. Sure. I have a wonderful video of mom and dad talking about Will I love this baby. And as she's crying. And when she's finished, I said, I just want to point out to you, as you're crying and grieving, remember, Little Genie is in there and feeling that too. And that's why they understand grief in utero.
1
Speaker 1
18:46
So in this new book, and in your interviews, are these children anymore? Sad? I mean, is there a kind of, is there a kind of underlying sadness in any of these children? Or a majority or minority?
2
Speaker 2
19:07
Well, I'm biased. Yes, I don't think so at all, although my co author, her research, some of the horror stories are older people with different kinds of losses. But no the majority of people even one man that I interviewed who came from a horrible, horrible family, yes. And he ended I always ask at the end, what do you want parents to know that are pregnant after a loss and he said that the emotions of children matter. Right? Even though he was pretty dysfunctional in his life, being raised by alcoholics and being the subsequent child, he to understood. Emotions matter.
1
Speaker 1
19:55
So just one last question about these kids. So You said that they're all wonderful. What did you mean by that?
2
Speaker 2
20:04
Sensitive, caring, reach out to peers that are having a hard time? And when parents when I interviewed the parents, they would say, they tell me something like that? And I'll say yes, but have you ever heard it from a teacher? And then they give examples where the teacher say, they're the first child to reach out to the new kid that's in the family, they pretend to be friend, the sibling or the children that have special needs. And they're just wonderful, caring people. But that's because they've had
1
Speaker 1
20:42
intervention. Yes, right. Right. Right. So is there a client? I guess you you call them patients or clients that people that you see,
20:53
ah, I just can't parents? Okay.
1
Speaker 1
20:57
All right. Just call them Joe and, Jeanne. So is there anyone in the city five years that kind of stands out to you someone who has who's whose history or experience has really sort of stayed with you?
21:16
Oh, gosh, there's just so many,
21:18
many, I'm sure. But let's think of one.
2
Speaker 2
21:26
Well, honestly, I think about some of the families who had a loss in a multi fetal pregnancy that were in our group, too. Yeah. And those surviving children also understand grief, and are just like the other ones that are caring and sensitive to others. So I don't know. There's just been so many there. They're in my box. Okay, read my book. Wow. Just because there's such beautiful case studies, right case stories of how they struggle and how they've embraced their baby.
1
Speaker 1
22:05
No, I can understand that. I can understand that. Do you have any children?
2
Speaker 2
22:10
I have three daughters and three stepchildren.
1
Speaker 1
22:14
Okay, and what are the three doctors up to?
2
Speaker 2
22:18
One is a lawyer. One is a pediatric family nurse practitioner, and the other one is yoga. And she's developed. She's a yoga teacher, but she's also developed a halo straw, which is a piece of jewelry that she has people wear when they have anxiety. And she's been trying to market it into the schools, but it's been a struggle, but it's amazing. Because rather than medicating, she wants people to have something and have them breathe into the straw and calm themselves.
1
Speaker 1
23:03
So do they understand your work? Do they process? They do? They do? They do. So there is no struggle there?
2
Speaker 2
23:12
No, when Aaron was the youngest wish she would say, oh, what does your mom do? She talks to babies.
23:20
But none of your children follow in your footsteps?
2
Speaker 2
23:24
Oh, well, I would say Aaron's Hallo straw. Right. And she's also written a beautiful song of a case that I have where the baby died while it was going through the birth canal. But we knew the baby was going to die. I think it didn't. I think in that case, there was no more fluid. So even though the mom tried to stay on, stay on the pregnancy, he stayed in utero. And I think being a pediatric Family Nurse Practitioner definitely has made a difference. Yeah.
1
Speaker 1
24:01
Okay. On a different on a different level. If you could have if you could have dinner with any three people dead or alive, historical or present, who would it be?
2
Speaker 2
24:15
Oh, Salma Freiburg? Yeah.
24:18
Sadly, that didn't take long. Yes.
2
Speaker 2
24:20
Mother infant mental health. teaberry brouse. Otto?
24:25
Uh huh. Did you ever meet him?
2
Speaker 2
24:27
Oh, yes. I've been certified in the browser chin twice. And my new talk that I'm going to start giving a for APA actually, I was going to submit it for APA is moving the browser to neonatal assessment into the prenatal period. And a third person, probably Anna fried Hi. Be interested.
1
Speaker 1
24:53
Oh, yeah. Uh huh. Ah, yeah. What about Sigmund you You would rather meet Anna,
2
Speaker 2
25:01
I think I'd rather meet Anna. And I'd love to see David Chamberlain again. Yeah, he was such an influence on my work. And you obviously I, I'll never forget the first conference I went to.
1
Speaker 1
25:14
Thank you. Thank you. Thank you. So, speaking of that, what was what are the most fun trip that you ever took in your life?
2
Speaker 2
25:28
The most fun trip? Yes. Oh, I have to say to when I was a single mom with my three kids. I had a rotary scholarship and lived in Belfast, Northern Ireland. During the troubles, it was great. But it was an amazing year. And then, the first time I went to Switzerland with my now of husband, that was beautiful, too.
1
Speaker 1
25:56
He, he's a judge. Is he not? Yes, yes. I remember him but not
26:02
at home. Not
1
Speaker 1
26:05
very good. When he comes to see us. Yeah. When you when he comes through the door, you say leave your judging. Outside. Right. Right. And that has been a lifelong struggle. I would assume.
26:20
He can be very judgmental. Sure.
26:23
Right. You've met him? Yes. I've met him. Yes. Yes. And
2
Speaker 2
26:28
you know, he doesn't you know, that poster I have of your unborn baby. I don't know if you'll remember it. But it gives him the creeps. One of the conferences with you or Williams said, Where's John? And I said, Oh, you know, John, he thinks for all kinds of weird. And he posts a really bothers him. Uh huh. Really? I think he must have some trauma to
1
Speaker 1
26:53
probably Yeah, that he doesn't want to work with. All right. So if you if you want a million dollars, what would you do with it?
2
Speaker 2
27:10
Gosh, I would definitely give most of it to start legacy to support our groups and get the rest of all my kids.
1
Speaker 1
27:24
Sounds good. Sounds good. So that, that takes me to the last question. What does what does being human mean to you?
27:39
Wow, that's heavy.
1
Speaker 1
27:41
It is. But you have all the time in the world. Take your time. What does being human mean to you?
2
Speaker 2
27:52
I think it means caring about other people and caring about yourself and reaching out to other people. Being kind?
1
Speaker 1
28:05
Yes, yes. That is so true. And especially in this day and age, wouldn't you agree?
2
Speaker 2
28:12
Yes. Yes. Very scary times.
28:15
Very difficult, difficult times.
2
Speaker 2
28:20
session I was at this morning on Monday, was talking about infant massage. And we are all in agreement. Everybody should get a massage. Not just infants. Mm hmm.
1
Speaker 1
28:32
Yes. And it's good for the person who is doing the massage and it's good for the person who's receiving it. Right. It's a win win situation. And, obviously, you know, you in the last 35 years and probably before that have have been a kind person and contributed to make the world a little bit a better place. And I guess that's all we can do. Right? I've tried. Yes, you have tried and you have succeeded. And you're working on a new book?
2
Speaker 2
29:09
I am Yes, I know, everything I know. And do. It's been because I partner with other people. I don't feel like I've done anything alone.
1
Speaker 1
29:19
Mm hmm. So what is the name of your new book again, before we close?
2
Speaker 2
29:26
Well, tentatively the editor, yes. Might want change it but we don't. It's going to be siblings raised in the shadow of grief, because there's a chapter on siblings that were alive at the time of the loss. Right. And then I also have a chapter of siblings who were the child born after a sibling with special needs. And that's a lovely, lovely chapter. Nobody thinks about those siblings. Oh, and it's from families that I worked with at The hospital and some that I picked up, you know, just knew that I was trying to do this, whose babies either were incompatible with life or did have special needs. In fact, one of the young adults now is 38 and just died in the last six months. And his mother has wants to have his picture in that chapter and some of his obituary. So, yeah,
1
Speaker 1
30:29
yeah. And who is the publisher? Do you have a publisher?
2
Speaker 2
30:33
Yes, it's the same one from my other book. Now. Let's not get it mixed up, Ron and level.
1
Speaker 1
30:39
Okay, very good. So thank you, Joanne. Joanne can be reached at
joann@starlegacyfoundation.org.
Before I let you go, Joanne, I would like to draw our listeners’ attention to my next week's guest, Dr. Steven Cole, who is professor of medicine, psychiatry and Bio Behavioral Sciences in the UCLA School of Medicine. And I will discuss with him the molecular pathways by which social environments influence gene expression. A little different from our conversation today?
Joanne, it was such a pleasure seeing you again after all these years. Thank you.
31:38
Thank you so much.
1
Speaker 1
31:39
I wish you the best of luck and hope we can meet again. Bye.
