You Are Not Alone: Fostering Prematurity Awareness Around the Globe

Photo credit: World Prematurity Day

Photo credit: World Prematurity Day

My new post about global prematurity is up at Preemie Babies 101 today! In it, I interview Aissata Sacko, founder and CEO of Assistance to Maternity Centers of Guinea. Aissata shared some of her personal story with me (she was born prematurely in Guinea, and her daughter was a 27 weeker) and told me about AMC Guinea's mission to help create more of an infrastructure for Guinean hospitals to be able to handle premature birth more aptly. The connection between NICU parents, even so far apart from each other, is incredible. Check it out here! 

"The Eternal Sunshine of the Spotless Mind"?

A documentary discussing an interesting issue was recently brought to my attention. It's about the plasticity of the brain, and talks about the potential for scientists to either place false memories or remove traumatic memories from individual's minds as a way to "heal" from trauma. Pretty science fictiony right? 

It got me to thinking about traumatic memories, particularly those of NICU parents. NICU parents have a unique situation: one in which the trauma that they've been exposed to had to do with witnessing their baby or babies fight for their lives in the hospital-- horrific-- but not necessarily in the same way that witnessing a car accident or physical abuse might be, as our trauma is intertwined with our babies' entrance into the world.  On this topic I was quick to realize that there's no way I would prefer to forget my traumatic memories; not only do they contain critically important details of my sweet boys' lives (and William's passing), but at the same time, the experiences gave me a completely different sense of the world around me. It wasn't necessarily a positive sense, but it felt powerful and important. It most definitely changed the way I perceived things; the way I think. 

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Trauma is essentially the experience of something terrible-- it can be either through our own experience of crisis or through watching someone we care about struggle with something extraordinary. Our brains work hard to make a discrete memory of traumatic circumstances for the evolutionary purpose of being prepared if something along the same lines should happen again. For example, one of my earliest memories is that of grabbing a metal railing to pull myself out of the pool at a swimming lesson-- it was burning hot-- I let go and sunk back into the pool. My mind stored that memory as an extremely important thing as my fear of drowning and the reality of it took over at that moment-- I believe I was only two years old.

Our experience of trauma becomes "disordered" (I hate that descriptor) when elements of our reaction to it continue to affect our lives in a negative way long after the trauma has ended. Many NICU parents have experienced this in ways like hearing a beeping noise that brings you back to the constant alarm of the apnea and other monitors in the NICU and becoming anxious, perhaps even sweating or developing insomnia in response to it. Many times it is our bodies that respond to these triggers; I remember once smelling hand sanitizer that had a similar fragrance to the one at our NICU and becoming physically ill. In fact, many newer theories about the experience of trauma posit that we hold much of these experiences in our physical bodies. It makes sense, as traumatic memories are often stored in a different part of the brain than our autobiographical memories; it is nonverbal, and has much to do with the sensory perception associated with specific memories: the limbic system. 

The neuroscientist Dan Siegel writes much about the notion that the attachment a parent has with their child can be gauged by that parent's own narrative memory and whether it is coherent or not. Additionally most trauma literature within the field of psychology puts forth the notion that in the treatment of trauma, the goal is for the client to develop a cohesive memory that incorporates the traumatic event within it. Siegel talks about how when a parent has gone through a traumatic circumstance, it's essential for them to integrate the memory into their own personal narrative in order to have an optimal attachment with their baby (Siegel, 2001). It reminds me of a conversation I had with a good friend when she was pregnant with her son. I told her that I hoped he would "always be happy". Her response surprised me at the time; she said that "I think it's also important for him to learn about sadness too". The conversation shifted the way that I perceived parenting significantly, and in actually becoming a parent, I realized that her words held even more power and honesty than I had previously thought. To imagine human beings as ideally being two-dimensional super-happy people leaves out a huge piece of the human experience. Without sadness or pain, what would happiness look like? 

So, what of it when we are confronted with the idea that we could forget the NICU and everything that happened there? Everything that at once deconstructed our lives but at the same time brought our children into the world? What would it mean for our attachment with our children that we wouldn't have any information about our most painful experiences, that were innately intertwined with their lives, to share with them? What of the gaps in our narratives? What if instead of "removing" traumatic memories from our conscious/unconscious mind, we instead worked to figure out how to perceive them differently-- perhaps in ways that serve us, our children, our families and friends in moving forward?

What if, instead of holding on to the end goal of "forgetting" trauma, we chose to carry it with us, perhaps in the hope that in communicating what we have been through, we could help others to understand it? 

Siegel, D. (2001). Toward an interpersonal neurobiology of the developing mind: attachment relationships, "mindsight," and neural integration. Infant Mental Health Journal, 22(1-2), 67-94.

If your interest is piqued by this subject, the documentary I referenced here is called "Breakthrough: Decoding the Brain" and on Sunday, November 15, at 9 pm ET it will air on the National Geographic Channel.

Animals grieve too.

I was recently struck by a post in the New Yorker: an interview between the neurologist Oliver Sacks and Temple Grandin, a professor of animal science and animal behaviorist (who is also autistic). Grandin, at one point in the interview, describes for Sacks why the cows at a particular farm are "bellowing"; she deduces that it's because the mother cows were separated from their calves that morning:

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"'They must have separated the calves from the cows this morning,' Temple said. 'That's one sad, unhappy, upset cow. She wants her baby. Bellowing for it, hunting for it. She'll forget for a while, then start again. It's like grieving, mourning-- not much written about it. People don't like to allow them thoughts or feelings.'"

As a NICU mom, the image in my mind of a mother feeling bereft in being separated from their baby couldn't help but drum up images of the morning I was discharged from the hospital, leaving my tiny boys behind. The grief of the NICU is tangible for parents, even when you haven't lost your child. Loss is loss (I wrote an article about NICU grief for Hand to Hold that you can read here). Grief is real. And unfortunately, our culture doesn't have a lot of practices within it to guide us through the pain. Perhaps even more striking is that in the recently released DSM V, the definition of "normative" grief has been relegated to a mere two weeks, suggesting that anyone who feels their loss for longer than two weeks to cope with the additional notion and stigma that they are clinically "depressed", in need of medication, or "different" from the "healthy" individuals who were able to "get over" their loss in a more timely manner. They even developed a clever title for it: Prolonged Grief Disorder (as if the bereaved or those coping with loss didn't have enough to shoulder-- now their grief is considered "disordered"). 

Anthropologist Barbara J. King described the mourning practices in animals of different species in a 2013 Scientific American article titled "When Animals Mourn" (she also published a book on the subject). It seems since Grandin made her statement about the lack of research into animal mourning practices, more scientists have looked into it.

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In a culture saturated with behavioral theories about why and how people feel, oftentimes based on over-simplified notions of the way our brains work, it's only recently that we've started to realize the importance of the limbic, emotional system of the brain not only in our own functioning, but in that of the vertebrates around us. King theorized that perhaps the function of mourning is intrinsically tied to the amount of love and attachment we felt for the individual or (in the case of NICU parents) the ideas about or hopes for the future that we lost. "What is adaptive, then, may not be grief itself but instead the strong positive emotions experienced before grief comes into the picture, shared between two or more living animals whose level of cooperation in nurturing or resource-acquisition tasks is enhanced by these feelings," she wrote, suggesting that perhaps love, happiness and attachment benefit our survival so enormously that it's important to grieve in order to move forward, to acknowledge the importance of what was lost, and to thrive.  

Why is it important to know that animals grieve too? 

Because in the face of a world that sometimes pathologizes grief, it's important to know, and to embrace, the idea that grief is a normative experience. Instead of being silenced in our grief, it's important for us to speak to it, and to connect with others who may be going through similar pain. It's important for us to overturn the idea that experiencing crisis and coping with it does not make us "mentally ill" or different from others, but rather opens our world to an experience that is incredibly difficult and challenging to navigate. In Western Culture, many of the historic rituals around death have been deconstructed or done away with, perhaps with the hope of keeping the fear of death, loss or grief at bay. With the knowledge that we as a species aren't alone in our grief, maybe we can reconstruct ways of talking about, honoring and integrating our grief, accepting it on a level that doesn't make it taboo, but rather, creates the possibility through which experienced individuals may be able to provide guidance for people just beginning their journey through loss. 

Is Growth Possible after Trauma?

My new post at Preemie Babies 101 went up today; it talks about the sometimes unexpected changes that can occur after having gone through NICU trauma. Check it out: 

"...After the NICU, as we assessed what still stood around us, what hadn’t changed dramatically or crumbled in our lives, I wondered how the experience would affect my story, our story, the story of our family. Did this trauma mean that we would become a sad story? Our lives a tragedy? Would our lives forever be shifted into the shadow of grief?

The answer, unexpectedly, was no."

To read more, click here. 

What the World of Psychology Can Learn From the NICU Parent Support Community

My career as a marriage and family therapist has by far and large consisted of work within nonprofit residential placements. Beginning at a residential high school for teen moms and their babies, through a placement for women transitioning from the prison system and being reunited with their children, to a setting for homeless teens working towards their independence, each site had their own challenges, rife with the notion that each individual who stayed there would eventually be on their own. How could we, as service providers (and in most cases a short amount of time), help our clients get to a space of capability that they would no longer need our interventions, our support?

As I learned more about what worked for my clients, and saw what inspired them, I realized that the power of their connection with each other had far more longevity than what my teams and I could reasonably provide as therapists. By the time I worked with the homeless teens, I (and my incredible team) understood that by giving our clients power over their own outcomes, and providing them with a contained space in which they could learn about setting boundaries, coming up with solutions, and attending to their problems together, that the community that they built would be far more long-lasting and empowering than anything I could look up in the DSM and diagnose them with.

Given the current state of the APA and the horrific acts that have allegedly occurred (in addition to a few adjustments in the DSM-V), I feel now more than ever that community-building, empowerment and diversity are the most efficient ways to help individuals who may be struggling with the events of their lives. In community, we can work out solutions by ruminating together, problem-solving, and using creativity to shift the way we think about the different things affecting us, changing even the very language we use to describe ourselves, our families and our stories.

Fast-forward to my new life.  One of my most frustrating memories of my sons' hospitalizations was of the PICU when Elliott was close to discharge, but not quite there. It felt like years that we spent waiting for him to coordinate the suck-swallow-breathe reflex and learn how to eat on his own. I distinctly felt as if he was in a residential placement. There were similarities: we didn't choose to be there, nothing we had done had prompted it, and we had to answer to an authority for even some of the most basic of our connection with our son. We also struggled with the stress and pain that almost three months in the NICU had prompted, had a hard time knowing what to do that would help us get out of the circumstance, were triggered by things that reminded us of where we were. It felt like we were children, who had no expertise over our own baby and who had no power to change our outcome. 

After the NICU, I knew that there would be nothing to which I could professionally dedicate myself towards more than the cause of the challenges faced by NICU parents. I researched, I thought about it, and I came up with as many ideas as I could to try and reach and help the NICU parent community.

And then, I launched NICU Healing.

As I stepped into this new world, a world about which I felt unquestionably passionate, I realized immediately that I was in good company. I started to meet other service providers, doing similar things but oftentimes in different ways. I realized that many people who had gone through the horror of being faced with the mortality of their infants or, for nurses, their charges, had had the same realization that I did: that there was no going back, that helping others in similar circumstances not only created a path towards healing others, but also healing ourselves. It was incredible to see, and to feel part of this powerful community. Meeting other providers was by far the most stunning component of launching my website.

The NICU support world focuses on creating a community of equals. Although each one of us can offer different aspects of expertise, there are no "experts" prescribing what families need, or speaking from behind the curtain a la Wizard of Oz. People aren't ostracized if it takes "too long" to go through a specific aspect of their grief. They aren't stigmatized. They are listened to. They are understood. They are given contact with others who have faced something similar that may have wisdom essentially helpful to that specific circumstance. We share our stories, problem-solve together. Come up with ways of changing the system when it isn't working for our community. This world of parents, nurses, counselors, service-care providers, peer support experts, authors, has such diversity, that an individual or family that finds themselves lost in the NICU experience has a plethora of resources from which to pull: if one approach doesn't "fit", there are many others to choose from. Because both parents and nurses have experienced the trauma of the NICU themselves, there is an innate empathy and compassion for others' circumstances, an empathy that perhaps can't be manifested without that very personal understanding? 

Perhaps the world of psychology could benefit from adapting some of these more person-centered, empowerment-focused approaches to working with individuals struggling in their lives. Perhaps, instead of looking for ways of becoming the "expert" on other people's pain, service-care providers can instead focus on being able to "be" with their clients, to be truly aligned with them, to help clients to recognize their innate strengths and move forward with dignity and strength. Maybe, the notion of being "other", or different, doesn't serve our clients very well, and instead recognizing that we are all in fact a part of the human community and all of us have some experience of suffering can be that much more inclusive and change-inspiring. Maybe there isn't anything "sick" about needing help when facing difficult times.