The experience of receiving a prenatal diagnosis of a life-limiting condition leaves families with many questions and complicated emotions to navigate. A key part of feeling fully-informed and equipped following a diagnosis, throughout pregnancy continuation, and in the bereavement period that follows loss, is having access to the insight and support provided by a multidisciplinary care team. Each member of a family’s care team serves a unique purpose, and Carrying To Term is here to help shed light on the role of each professional.
Carrying To Term was fortunate enough to have the chance to talk with Dr. Andrea Campaigne, an obstetrician-gynecologist, about her role in the lives of families facing a prenatal diagnosis. Dr. Campaigne is a passionate advocate for providing individualized care to women and their families, and her compassion, wisdom, and love are evident in how she speaks about pregnancy, about women, and about her experiences with patients. It is our hope that this conversation highlights the critical role of obstetricians in the experience of receiving a diagnosis, continuing a pregnancy, laboring and delivering, and saying goodbye to a baby.
When did you first feel inspired to become a doctor? Why did you choose obstetrics as your specialty?
I clearly remember watching treatment being administered to my sister with great empathy. I was always a little protective of her experience and a little curious about who was treating her and what they were doing. I was also inspired by our family’s primary care doctor. He was kind and gentle, took care of us, and focused more on our wellness than our illness.
Choosing OB/Gyn was not a light bulb moment for me but more the result of an analysis. I like many rotations – from general surgery to psychiatry – and frankly OB/Gyn offers both of those! I wanted to practice lifetime care, but I ended up liking the way many different people can come together as a team in the acute setting of the hospital. I liked how someone with advanced training, skilled hands, and the patient’s trust can help navigate their patient’s experience through a challenging or adrenaline-filled experience like childbirth or surgery with grace and empathy.
Your approach to obstetrical care is relational. You make a point to foster a relationship with your patients and offer individualized care specific to the needs of each patient and their family. Why is this your approach? What benefit have you seen this approach have for your patients? How has this approach shaped you as a doctor and a person?
I think of everyone I come across as a star in the universe. Everyone has a story. Women are cared for so much when you just see them. Their care depends on understanding them uniquely, and I just have to deliver individualized care. It’s my world view. People are not numbers to me, and we should not all look or be the same. Women tell me all the time that they felt more comfortable with me than they have with any previous health care professionals, and therefore, disclosed more to me. I don’t take credit for the benefits of “my way” of doing things, but I ponder often the failures that are possible when health care does not acknowledge the whole person and her context. I try to avoid those failures as much as possible and approaching each patient’s care in this way has helped me do that.
As an obstetrician, you have seen the huge range of experiences that women and families have when it comes to fertility, pregnancy, and childbirth. Pregnancy, while exciting and joyful, is also difficult, overwhelming, and emotional, even in the best of circumstances. What do you wish more people understood about this experience?
There is something cosmic about who is sent to us to mother, just like who is sent our way to fall in love with. We are not in control of it. It is a great gift. But just like heartbreak in love, there is sometimes heartbreak in fertility. I think of pregnancy not as the journey to birthing but as the journey into parenting. It is fundamentally a death — or at least a transformation — of our old, selfish life and the becoming of a new giving, sacrificing, selfless parent. We should have less ego and take less credit for our experiences and be more humble and wondrous about them. They shape us. I love the womb, and I think it is our superpower. I love it as an ancient and mystical tradition. I love what is old-fashioned about it, and I don’t want us to be afraid of it. It can take women to very frightening places, but we grow from those places. Women have come before us and done this, and we can derive our strength from that knowledge.
Pregnancy and infant loss are unfortunately a very real part of pregnancy. As an obstetrician, how do you navigate this experience with families? What advice do you have for these parents about loss, grief, and the future?
Each woman’s tragic experiences are so important to me. There is nothing “common” about them, and there is no right way to “get through them.” I don’t have the answer for “why,” but there is definitely loss in fertility. It is heartbreaking, but grief is a process that we grow through. The wisdom about not knowing light unless there is darkness is true. I have navigated this experience of loss so, so, so many times with patients, and while I can say nearly the right thing, I don’t think there are ever the right words for this experience and pain. It’s about being there for them and with them. It’s about guiding them through it, helping them cope with it, and helping them ultimately be at peace with it. I believe there is a lot of intimacy through loss, both between doctor and patient and between the parents. Nothing can change the pain, but I do believe that good can be found in these experiences. The future can be even sweeter because of the journey to get there.
Have you ever had to give a parent the news that their unborn baby has a life-limiting diagnosis? What was that experience like for you? What do you wish you knew then? What advice do you have for parents facing that experience? What advice do you have for other doctors who have to deliver that news to their patients?
I have had to give parents this news many times. I feel called to be there on those days, and I have a mantra for parents: “On that day that you are ask to, you will be strong enough to handle it. You are already prepared because you are already their parent.” There is something that comes through the love that a parent feels that I believe trumps the fears, judgements, and not knowing. Somewhere deep down, these parents are able to find the strength to say, “this is my story now.”
A woman and her partner are uniquely built to make the right decisions for themselves and their baby, even when they are feeling overwhelmed and like life is unfair. This should be supported and encouraged. There is no right way to grieve. There is no right way to carry. As doctors, we need to provide the time, space, and information needed to help women take the next steps and make the right choices for them.
Why is it important that women feel fully-informed following a prenatal diagnosis of a life-limiting condition? How do you ensure that your patients feel informed, equipped, and supported as they navigate the news, make big decisions, and prepare for their experience?
Most women don’t know the spectrum of terrible things that are possible in the fertility realm, and that is good. I don’t want all pregnant women to focus constantly on all the various what-ifs, because that is too much anxiety. I remind my patients constantly that the “denominator experiences,” or the positive outcomes, are more common than the “numerator experiences,” or the rarer complications and heartbreaking situations.
When one woman is having a “numerator experience,” it is vital that she is fully-informed about that experience. I want her to know that we, her care team, have experience with what she is navigating and what is to come. I make sure she is supported and equipped as she thinks through the many different scenarios, including the worst-case ones, and all of her options. Her experience is unique and individual, so I approach her care in that way. We take it one day, one decision, and one emotion at a time.
We encourage carrying to term parents to gather and utilize a multidisciplinary care team that includes their obstetrician and/or midwife, perinatologist, specialists, as needed, like pediatric cardiologists or neonatologists, palliative care, geneticists, social workers, nurses, therapists, and chaplains. How does an obstetrician contribute to a multidisciplinary care team for carrying to term parents?
Ideally, the obstetrician should be the hub of the team-based approach. They should be the coach and the patient’s number one advocate. The obstetrician should be there to help the patient navigate working with a team of providers by regrouping with the patient after her other appointments, helping her filter through and address all the information she has been given, and helping her process her way forward. Ultimately, the obstetrician is who is standing there with her in that final hour, so it is important that we be there every step of way.
What is the labor and delivery experience like for a family who knows that their baby will die shortly after birth? How do you prepare your patients for this? How do you help them be present, make memories, and have the best possible experience in the middle of such heartbreak?
I often use the word “holy” about birthing, even if not in a strictly religious way. It is a time when we are touched by a much greater power and plan. The labor and delivery for a baby with a terminal diagnosis is a sometimes solemn, sometimes special time. The mother works equally hard as any other laboring mother, and she is equally, if not more, anxious about meeting her baby.
I try to do many of the same things for her that I do for any of my patients: keep the stimuli in the room in accordance with her mood, be supportive and reflective of how she is feeling, keep her options open. Birthing is about mother and baby working together, even in situations when the baby has died or will die. This is a transformative experience, and I hope mothers who have lost their babies can remember, in some small way, that the day they brought their baby earth-side was a beautiful experience they shared as mother and child.
Pregnancy, labor and delivery, and even the grieving process can often be mother focused. How do you include significant others in this process? What advice do you have for significant others about this experience?
I talk openly with my patients and their partners about the grief process for each of them. It is important that the partner is considered and included along the way in these conversations. I tell my patients and their partners that grief is a time for a couple to really be together, and there is such a depth of love that comes from emerging from grief. Each party has to move through grief at their own pace, and it is important to realize that in trying to be there for each other, a couple may encounter days and stages where they don’t understand each other and are not on the same page. In this case, they each need to look at their own coping methods and find a focus that isn’t solely their intimate partner. Navigating grief together is important, but it is always important to respect and honor where each individual is in their own grieving process. I tell my patients and their partners that actual intimacy is important during grief, too. I make a point to acknowledge the fear that can come with that act, as possibly making another baby is sometimes frightening for women and their partners. I am there to say that fear out loud, validate it, and help couples make whatever plans they need and want to around that possibility.
As the doctor, what is it like to support a family through labor, delivery, and the death of the baby? What impact have those experiences had on you personally and professionally?
It is never easy, but it is a very beautiful, powerful, and memorable day — one that I respect so much. I have always felt called to take care of women through the full spectrum of what life can ask of us, and that means being there on the bad days. I have so, so many memories of being there with parents on the day they delivered a baby they lost, and those are treasured memories for me. Loss is a possibility in reproduction, and it is not one I shy away from. Each time I have an experience like that with a family, it helps me be more ready for the next time I enter into that experience with a patient. Each experience makes me a better doctor and person. Each story is important and has power, and I want us all to be able to tell our stories without fear.
You are trained to treat perinatal mood and anxiety disorders. Why is that support so important for women and families? How do perinatal mood and anxiety disorders affect bereaved families? How do you help bereaved families understand the difference between grief and perinatal mood and anxiety disorders? How do you help families get the support they need?
I am glad you asked. It is truly one of my favorite things to do. Throughout their care, I hope to have a lot of dialogue with my patients that invites transparency about perinatal mood disorders. I tell them that we can all expect that this could be a possible outcome, and if they experience it, they are not to be embarrassed or brush it under the rug. Perinatal mood disorders happen to many women, even when not superimposed with grief. All women and their partners should be made aware about what to look for and what to expect.
When dealing with grief and perinatal mood disorders, it is important to be knowledgeable and respectful with regard to delicately untangling the two and treating both the mood disorder and the grief. I am in no way a grief expert, and both grief and mood disorders look different in different individuals. What is important for me to communicate and invite is a self-assessment of “how well — or not — they are coping” and not measuring any individual against some standardized tool. If an individual or their family think they need help coping, then we can explore and design an individualized plan of care, which includes multiple modalities, when they are ready for them.
Subsequent pregnancy after the loss of a baby is a nuanced, emotionally complicated, and overwhelming experience. What advice do you have for parents who are considering getting pregnant again after their loss? What advice do you have for providers caring for these families during pregnancy after loss?
Well said. Yes, it is. It is also one of my favorite things to go through with a family. Sometimes we say that acceptance is the final stage of the grief process in perinatal loss, and acceptance often exhibits itself in future fertility. I don’t know that anyone ever feels “ready” to become pregnant again, and it is always an anxiety-provoking adventure in surrendering. After loss, we, the doctors, are prepared to be more delicate in the approach to each step. It is very hard for a couple to believe the outcome will be different, even when that is most often the case. So, from preconception to initiation of prenatal care to approaching the “normal” milestones or the moments at which the diagnosis was made in the previous pregnancy, the focus should be on emotional support, not a more rigid and rational approach to the details of prenatal care.
Based on your extensive experience practicing as an obstetrician, what do you know now that you wish you knew back in medical school and residency? What training do you wish was available during that time that would have prepared for you the challenges of your job?
I think I was wired like this in residency too. My empathy runs deep. But what was missing was long relationships with people. As I have walked through a woman’s full reproductive life with her, and all that it has brought, I have come to deeply appreciate the growth and redemption of that experience. I believe that every woman’s story was chosen specially for her, even with loss, and I have had the privilege of bearing witness to the strength she exhibits through it and on the other side of it. I do wish, though, that there was more bereavement training for us. I wish that resources in our community were better linked and easier for the patient to navigate. I wish that traditional health insurance valued and allowed the patient to spend more time with me and me with them for mental health support.
What advice do you have for your colleagues about caring well for families facing the death of their baby? What advice do you have for your colleagues about caring well for themselves as they care for their patients?
It is fundamentally one of the most important days in our patients’ lives for us to show up, to be great, to support them, and to foster them. So, do that. Be gentle. Don’t be patronizing. Take the time they need. Give them choices, and let them process those choices.
You are so kind to bring up a bridge to the topic that burnout is real for us, and even at the very least, that sometimes we need to extend compassion upon ourselves to also navigate our own feelings around a traumatic event in whatever ways we need to. We need to take that time, be honest about how we are feeling, and seek support as we need it.
Any final thoughts?
I have always believed in sharing some of my own personal experiences with patients. Not every doctor practices this way or desires to. But when I have, it always deeply impacts the patient’s experience for the better, because it makes me human and multi-dimensional to them. So, to a new doctor, find the art of balance when comes to sharing. Patients don’t have to use your experience to navigate their own, but they benefit from knowing that you have a depth of experiences and emotions and that they are not a simple day at work to you.
I am not afraid of loss. Love is not only present on the “good days”. Sometimes with loss, we are reminded about the greatness of love. I think all life has a purpose, and sometimes, babies are sent for only a very short time. All of our babies teach us to reflect deeper on who we are and to stand up stronger as their parent.
WHO WE ARE
Andrea Campaigne, MD, relocated to Austin from San Antonio where she was born and raised. She is an energetic native Texan who escaped to New York for undergraduate education in Art History at Columbia University. She hurried back for medical training on the campus of the University of Texas Health Science Center at San Antonio where she earned her MD in 2004 and completed her residency in Obstetrics & Gynecology in 2008. She started her own practice, Nurture, in 2011, which was a physician-midwife collaboration. Since 2017, she is happily a part of Austin Regional Clinic, a locally-grown, physician-led health care team. She is a passionate educator and loves to extend her enthusiasm for teaching in the form of patient education. She believes that health care delivery should be kind, compassionate, and adaptable between patient and provider. She enjoys all aspects of OB and Gyn practice but especially adolescent health and contraceptive management, prenatal care including high risk pregnancy, and in-office procedures. Dr. Campaigne is married to her high school sweetheart, and they have two kids, Crosby and Nina. They love traveling and spending their spare time doing things outside. They are a perfect fit for Austin.
Carrying To Term is a national 501(c)(3) nonprofit organization dedicated to broadening access to non-directive educational, logistical, and emotional support resources for prenatal diagnoses of life-limiting conditions. For more information, please visit www.carryingtoterm.org.