Pregnancy that follows the loss of a baby is a complex journey that carries grief for a deceased baby alongside the struggle to attach to a new unborn sibling. Fear of another loss can cause parents to think “pregnancy” but not necessarily an unborn baby growing within. When pregnancy care focuses on the medical care and technology it can overtake and minimize the mothers’ perspective and knowledge of her unborn baby. This presentation will address ways to advocate for health care needs of both the mother and unborn baby that supports the prenatal reciprocal relationship forming during pregnancy. Ways to help parents cope, manage fear and anxiety, navigating their resurgence of grief will be discussed as well as the need for more research in this area.
Dr. Joann O’Leary has a PhD, MPH from the University of Minnesota, and MS in Psychology from Queens University Belfast, Northern Ireland. She is endorsed as a Level IV research mentor in Infant Mental Health. Her background includes preschool special education and 18 years as a Parent-Infant Specialist in a High-Risk perinatal center and currently facilitates support groups for Star Legacy Foundation. She was a 2016 Fulbright Specialist at University College Cork, Ireland. Her research focus is how perinatal loss and the pregnancy that follows impact parents, children, and extended family members.
Ms. Lynnda Parker is a registered nurse and holds degrees in education, nursing as well as graduate studies in nurse midwifery and is adjunct faculty in a school of nursing. She was a clinical nurse specialist in a high-risk perinatal center when she and Joann founded the Pregnancy after Loss Support Group, has taught child birth education specific for these families and developed a “Bodyworks” pregnancy class for women experiencing a complicated pregnancy.
Dr. O’Leary and Ms. Parker have disclosed that they do not have any real or perceived conflicts of interest in making this presentation.
Doug Stewart: Hello, my name is Doug Stewart. It’s my pleasure to introduce Dr. Joann O’Leary and Lynnda Parker. Dr. O’Leary has a PhD, MPH from the University of Minnesota, and a Masters in Psychology from Queens University in Belfast, Ireland. She is endorsed as a Level IV research mentor in Infant Mental Health. Her background includes preschool special education and 18 years as a Parent-Infant Specialist in a High-Risk perinatal center, and she currently facilitates support groups for the Star Legacy Foundation. She was a 2016 Fulbright Specialist at University College in Cork, Ireland. Her research focus is how perinatal loss and the pregnancy that follows impact parents, children, and extended family members.
Lynnda Parker is a registered nurse and holds degrees in education and nursing as well as graduate studies in nurse midwifery and is adjunct faculty in a school of nursing. She was a clinical nurse specialist in a high-risk perinatal center when she and Joann founded the Pregnancy after Loss Support Group. She has taught childbirth education specific for these families and developed a bodyworks pregnancy class for women experiencing a complicated pregnancy.
Joann and Lynnda have facilitated Pregnancy after Loss Support Groups and childbirth education for the last 30 years. They recently were authors of the book, Different Baby, Different Story, which was based on parents’ experiences over the years doing support groups, both during pregnancy and postpartum, as well as one-to-one intervention in their clinical work within a high-risk perinatal center. Their presentation is titled, The Journey of the Unborn Baby in Pregnancy Following a Loss.
Dr. Joann O’Leary: Hello, my name is Joann O’Leary and next to me is Lynnda Parker. We are going to be talking about our clinical work over the last 30 some years, working with families pregnant after a loss and talking about the journey of the baby and the pregnancy that follows. All things that we have learned from working with parents very closely.
I want to start by just talking about traditional prenatal visits. We all know that during the traditional times they do the mother’s weight, blood pressure, urine specimen, check the heart rate, measure the size of the uterus, but the relationship between the mother, father, and the fetus, unborn baby, is not always assumed. People think pregnancy, but not baby until birth.
We really believe if people could acknowledge that the baby is already here, it can help prevent stillbirths. One of the things that I do and talk about parents to do is when you see a pregnant person, ask, “How old is your baby?” Not, “When is your baby due?” Just changing that can help change practice hopefully.
Lynnda Parker: There’s a deep connection developing during pregnancy, which if you’ve been pregnant you know. Fetal cells enter the maternal circulation during pregnancies, and that includes any babies that were lost even in early pregnancy loss. This can be really important for parents to recognize, particularly when there has been loss. It can be a real healing and explain why the baby feels really present.
Dr. O’Leary: This is one of the parents that I interviewed in my research, pregnant after a loss. “I thought a lot about one of the coolest things about subsequent children is you think they were in the same space, and I always wonder if they knew that somebody else was living there. I think they do.” Definitely in my research with adults where the child was born after a loss, they would confirm that especially those that have done regression kinds of therapy.
Our latest book, Pregnancy and Parenting after Loss is written by four authors, all who are working in the area of the pregnancy that follows loss. It’s the stories from the parents as to how they went through the pregnancy and worked at embracing their new unborn baby. We always talk about the intertwine between the deceased baby, the unborn baby, and of course, older siblings, if they’re part of the family, because that’s another whole topic, but definitely they are impacted by the loss too.
We know from research, that’s not been documented– Clare and I wrote this first article in 1994 working with the fear and anxiety of another abnormal pregnancy, avoiding attachment for fear of future loss, moving past the unwillingness to give up grieving out of loyalty to the baby who died, attaching to the unborn child separately from the deceased child, and grieving the loss of self, the self that is the parent. It is our job to protect our children. Of course, partners have an additional task, fear of maternal death, if the pregnancy was very at risk and the mom had been very sick too.
These are really important because people hang on to remembering the deceased baby because everybody else seems to think, “Oh, you’re pregnant again, everything’s going to be fine now.” That’s why they are unwilling to give up grieving out of loyalty to the baby who died. “If I do that, what does that mean for this baby?”
Our model of intervention is prenatal parenting. Our children lead the way both postpartum and during pregnancy. What we did was in my work in the field of early childhood, especially in the program that I was in before I went to the hospital, I really saw that parents need to understand how they’re raising their children is based on the developmental age that the child was at that time. A child at three months gestation is the same baby that you’re going to see at three years just at a different developmental level. Just after birth parents’ behaviors adapt to meeting the child’s needs.
When I began working at the hospital setting, I really saw that what the childbirth educators were talking about, the psychological tasks of pregnancy really was based– the changes that the parents were making during pregnancy was based on how old the unborn baby was. What we need to do is help parents facilitate mindful intentionality of parents, getting to know, nurture and protect their baby.
This is a handout of what it looks like a normal pregnancy. Then we have then developed it to what it looks like in the pregnancy that follows loss because it’s very, very different and the baby’s development doesn’t change. You’ll see on the top line, fetal development doesn’t change, but how parents embrace the baby is very, very different because of all the fear in their next pregnancy.
I’m going to start with the first phase, which is the smooth stage moving into breakup. The smooth stage is right before conception because everything has to be just right for the sperm and egg to pull together. Then once conception occurs, the baby literally moves into breakup where they are forming and becoming, and by 12 weeks gestation an unborn baby is fully formed at this young developmental stage.
Mothers as well as fathers are also in breakup. Mothers because physically and emotionally, they have to take on the tasks of pregnancy. Their breasts become increased, they have morning sickness and there are changes in identity and feelings about taking on another pregnancy. They might think, and their families may think, “Oh, if they’re pregnant again, they’re really going to be happy.” But what happens is it scares them. Their initial joy of pregnancy changes to, “Oh my gosh, this baby could die too.”
The baby moves into sorting out which is really the baby is now in there sorting out the intrauterine environment, practicing movements, hearing voices on the outside and early fetal movements began as far as their flexing and extending and just visualizing this little baby, and they’re sorting out what’s going on on the outside world. This is when loyalty to the baby can be very strong.
I just remember someone who had found out– I think she was 18 weeks, 20 weeks, that she was having another boy and she didn’t look happy. She knew the baby was healthy. I said, “What’s going on?” She said, “If I love this baby, what does that mean about my loyalty to my baby that died.” It’s really, really important in the sorting out where we start talking about it’s okay to share your feelings with the unborn baby. This can be really scary because people say, “I don’t want this baby to know what I’m thinking,” because they’re still more attached to the deceased baby, which makes perfect sense. Anybody in a subsequent pregnancy with a healthy child having another one will think, “I’ll never love this baby as much as I love my first child,” but they have to begin to learn that there is room in their heart for both babies.
We just say in our group, it’s okay to share your feelings because all of you that are in this Zoom group tonight, or if you have in-person groups, the baby’s already hearing the stories. What you’re doing is giving them the information for what’s going on.
One of the parents shared, and hope this works, her feelings about it because when somebody first started group there, it’s like, “Oh, I don’t want to tell you how many weeks pregnant I am.” As we got to the end of the group, she realized it was in order to say good night to the babies. Then she shared, and one of the other moms said, “Yes.” She said, “When you started doing that, I was like, oh no, I don’t want to listen,” because she was only four or five weeks pregnant when she started. She said, “I was too afraid.” The other one said, “Yes,” she said, “But I began to realize how important it was, and I looked forward to it,” and she allowed us to share this little quote.
I apologize for the slide that you were unable to hear what the mothers shared about talking to her unborn baby during pregnancy. Before I have Gina tell us what she did, I also want to say that because it’s so hard, one parent said she talked to her plants when she was watering them so of course she could talk to her unborn baby. This is Gina now sharing how she was uncomfortable when we first said goodnight to the babies, but how much it helped her embrace and separate her babies.
Gina: Initially, it was tough to hear the saying goodnight to the babies. In my pregnancy after loss I had a very difficult time connecting with this pregnancy and baby. Over time, I became fond of this ritual since it brought forth mindfulness and did in fact facilitate bonding with this baby pregnancy after loss was extremely challenging on many levels, especially when you throw a pandemic into the mix. Once the baby arrived, I was instantly in love, I think because I fought so hard to get him here, though it was heartbreaking to look at him and know that Hannah should have been here instead.
Dr. O’Leary: Again, she’s talking about separating her little boy from her previous baby that died, and this is a picture she shared during her pregnancy.
Gina ends by saying Hannah should be here, but really what she’s really saying is Hannah should be here as well as the subsequent child.
Then the baby moves into inwardizing where the mother’s more aware of unborn babies’ movements. This is when– go ahead. You’re the nurse.
Lynnda: Yes, this is where parents often start antenatal testing or electronic fetal monitoring. As they become more of the movements, this can be an adjunct to the mother’s subjective information about how her baby’s doing. We always talk about how important it is for parents not to let technology take over. Although technology is really important in assessing the baby’s overall health, it’s really a combination of the mother’s subjective knowledge of her baby, which really can’t be replaced, and putting that together with objective information that a fetal monitor can get to really ascertain the truth about how the baby’s doing.
Dr. O’Leary: It’s more than just a fetal movement. It’s helping the mom understand, again, who her baby is. Clare that used to do the antenatal testing, in the 15 years she worked, she had no losses, which is pretty remarkable when you think about it. What she did before she even started the monitoring was, “Tell me about your baby.” Then she would say, “Okay, now we’re going to put the monitor on and see if what you’ve just told me is what’s going on with your baby,” because it’s really helping to appreciate and empower the mother that they know their baby best. She could tell you many stories about how they’ve saved babies because of it.
Mindfetalness is the new term in research that’s coming out now which is focusing on the intensity, the way the baby moves, and how much the baby moves. Eric Knox always would add– the perinatologist we’ve worked with, “It’s not who your baby is, but how your baby is. If there’s a difference, and if there’s a change, the mom needs to come in and be seen.” It’s really what we called prenatal parenting, and now there’s a term called mindfetalness.
Then the baby moves into expansion where the– and again, keep in mind that the parents are parallel in their development. Expansion, obviously, it’s expanding the uterus. The baby takes position for birth. There’s increased brain development occurring, sleep/awake cycles start, and one of the things that I think is important to know in expansion in the mothers knowing their baby is and the baby giving signals–
I think of a mom that was in our group. She went into preterm labor I think at 34, 35 weeks. She was really scared and I went up to visit her while she was in labor, and they had put her on medication to try and stop the contractions, but they were just continuing. I said, “Maybe the baby knows more than you do about what’s going on in there.” Sure enough, when the baby was born, he had meconium throughout its body. Fortunately, he had not swallowed meconium. It was like, “Oh my gosh, that baby did know that it was time to be born.”
Another mom that came to my infant as a person class that I used to do, who was really grieving because she’d had a caesarean which she did not want. I said, “Well, tell me what happened during the labor.” She said, “Well, I was having really strong contractions and I got to six centimeters and I just wasn’t progressing at all.” Finally, I started to progress and the fetal heart tones went down. They did an emergency caesarean and lo and behold, the cord was wrapped around the baby’s neck.”
I just said to her, “Oh my gosh, think how smart your little baby was knowing, “If I go down any further, I’m going to be in trouble.”” He went just enough to alert people on the outside, “This is not my way out.” It totally changed her view of it was her fault that she had a caesarean and that really, she was following the lead of the baby.
Then it’s also important to know, and I love John Condon talking about, there’s such a difference between emotional reaction to the fetus versus a reaction to the pregnancy and the unborn and the baby once they are born. Again, it’s the same baby only at a different developmental level. This is artwork that one of the parents did before her baby was born. And this is what the baby looked like postpartum.
Then we have two quotes from parents talking about knowing the babies during pregnancy.
Wanda: That was an important part for me at group too was thinking about the babies as whole people before they were born and communicating with the babies about the loss when we lost Samuel and communicating with the girls a little bit about, “Mom is scared about this. You girls need to shore me up here and bear with me,” because I know that the babies know the chemical reactions of when you’re nervous or when you’re grieving.
Parent 1: We knew Angel before she was born. When she was born, it was like a continuation of what we have been– because I talked to her and we talked to her, we read to her, we played together when we knew that things were getting better.
Parent 2: She’s a strong baby. I think she was determined to be.
Dr. O’Leary: Then the baby moves into after birth, what’s called it’s called neurotic fitting together, and the nurses used to think, “That is such a horrible term,” but anybody that’s postpartum will say, “Yes, that’s kind of how I felt.” The baby comes into the world knowing– I think one of the reasons they have their six states of consciousness is to help control the stimulation.
You think about the baby now on the outside having to learn how to eat, when they’re hungry, when they’re full, what to do with gas, and then adjusting to hearing and seeing. That’s why when the baby looks directly at the face and then will turn away, it’s taking a break, and the parents now are adjusting to, “My God, I have a living child.”
They’re adjusting to all the emotions that are going on postpartum and the hormonal changes that the mom and dad are going through. They’re also in tremendous equilibrium to match the baby’s development and a whole new layer of grief surfaces. It’s so developmental. Even if you think that you’re going to be prepared, you’re not prepared. It’s just a new layer of restarts when they get pregnant, because this isn’t the new baby, and now, they realize the full impact of what they lost in their baby that died.
Now what? This is really common. “We were not prepared for a living baby.” They were working so hard just to get through the pregnancy that they couldn’t even think beyond, “Maybe we’ll bring the baby home.” As I said, it’s a whole new layer of grief. Others may not understand you continue your parenting role to your deceased baby. They want you to be happy now. They are like, “Why are you still grieving that other baby?” Or, “Why do you still need to talk about that other baby?”
This happens for older siblings too. One of the struggles parents talk about postpartum in the parenting after loss group is finding time for both babies, because they’re so busy with this new baby that sometimes they’re like, “Oh my gosh, I haven’t even thought about Christopher since this little brother came.” Again, it’s helping them find time for both babies.
I want to just briefly touch on children born after loss. We know that our earliest memories are not conscious, not even unconscious in the standard sense. We record the experience in history of our life in ourselves, which goes back to fetal cells remaining in our system. I’m just going to briefly mention a couple of the themes that I found in my research.
These children are sensitive and nurturing to others. I have researched adults who were the subsequent child, as well as parents raising their subsequent children, and this is one mom talking about the kids. “It’s made my kids more perceptive when they hear that their friends have lost someone. They understand, they have an appreciation of life, and they’ve always had that. Tony was born with it,” is the child that was born later, “and they were given that at a very young age.” In the grief that’s in the family, they also learn about how to help reach out to other people and are sensitive and nurturing others.
Also they are able to see the gifts from the deceased sibling. I would say 90% of the people that I interviewed as adults, even ones that had a very difficult childhood are in working fields and they’re pastors, they’re social workers, they’re teachers of young children. This is another adult subsequent child who did foster care for children and she said, “Every little baby that came into her family, she would say, “I was very aware of the little environment and what they were taking in the affirmations. I would say, “You are just so beautiful,” because she said, wherever they go after their weeks with me, I want them to know that somebody told them as an infant, “you are just so beautiful.””
Children who know the deceased child is part of the family are free to ask questions. This is artwork from a little girl who is the second subsequent child, and you can see she is drawing her little brother up in the stars. Then this is another little girl who was the child born after Bailey. Bailey was the deceased child. “Bailey and I, and Madeline and Isabel all played in your heart.” Again, just the sensitivity in knowing how important that is.
We really believe the greatest mistake in the treatment of diseases is that there are physicians for the body and physicians for the soul, although the two cannot be separated. We are not destroyed by our suffering. Well, we can be, but we are destroyed by suffering without meaning, which is why helping to get meaning of their parenting of their deceased baby helps them know they’re still parents, no matter what other– [sound cut] Now they can be parents to two little children, not just a newborn that’s born alive.
That’s why we think it’s important for parents to come to support groups, to journal to their baby if they can, to do art therapy work if they can as you saw in one of the slides. Yoga is so important for helping to release the trauma they might’ve had. Relaxation and mindfulness meditation all can help parents to connect to the unborn baby as a fully present, sentient being and minimize the impact of maternal stress and fetal development.
This is a link that I put on for you to look at because parents worry that the anxiety and stress that they’re carrying in their pregnancy is going to impact their child, but so far, the research on anxiety and stress has not been done with pregnant people after a loss. I just keep telling people, “You need to say the words out loud so that the baby–” Saying the words out loud takes away the power of it being stuck in you, and it can make a huge difference in helping you know that the baby does understand at some level what’s going on.
In conclusion, I love this. “The intuitive mind is a sacred gift. And the rational mind is a faithful servant. We have created a society that honors the servant and has forgotten the gift.” Honors the servant, which is research and has forgotten the intuitive gift the parents have. Our role is to empower the mother’s intuitive knowing of her unborn baby and helping them learn how to have the unborn baby give them messages. Thank you for coming.
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