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"I nearly died after giving birth. Now I'm on a mission for other moms."

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"I nearly died after giving birth. Now I'm on a mission for other moms."

This is a story about how I almost died after giving birth two years ago – and what I’m doing about it now to make sure what happened to me doesn’t happen to anyone else.

I had delivered my beautiful, healthy boy on Mother’s Day 2017, and had just come home from the hospital when I realized that something was wrong. Of course, I had expected to feel wrecked after childbirth – who wouldn’t? – but this was different. This wasn’t “normal.” My face was swollen, my heart was racing, my head pounding, and while I thought I could cure this with a nap, I suddenly had the feeling: If I go to sleep, I won’t wake up.

We went to the closest ER, five minutes from our home. I told the staff that I might have pre-eclampsia. I was no expert, but I had just read about a mom who died of the condition because her symptoms were overlooked until it was too late, and from what I could tell I had every classic sign.

Waving away my concerns, the staff gave me blood pressure meds and a bed to rest in.  I was told, “You do not have pre-eclampsia.”  They wanted to send me home. 

Lucky for me I didn’t believe what I had been told. I pushed back. After a sleepless night of panicked worry, taking a picture with my son thinking this may be the only thing he will have of me, eventually I was transferred, reevaluated and diagnosed – it was postpartum pre-eclampsia. I was immediately treated, and a few days later I was back home with my son. 

But a switch had been flipped. I had successfully advocated for myself; now I needed to advocate for others. I had to make sure what happened to me – the lack of information provided to me about maternal complications before my discharge from the hospital the first time, the missteps and miscommunication that had put me unnecessarily at risk the second – wouldn’t happen to anyone else. 

My first move was to reach out to the Chief Safety Officer for Gynecology and Obstetrics for the two facilities where I received care. I called and emailed and requested in-person meetings to discuss how my case could have been handled better. I studied up and prepared talking points. I downloaded and printed out a handy list of warning signs and symptoms, developed by the Association of Women’s Health, Obstetric and Neonatal Nurses (AWHONN) that nurses in other states had already started sharing and sending home with patients. (A poster version is available from the AWHONN website in four languages.) 

I was not an experienced advocate – my day job is as a research scientist in a university lab – and I didn’t know how it would pan out, but I knew I had to try.  

And policy change did come. Now, at the hospital where I gave birth, the AWHONN “save your life” flyer is reviewed with new moms before discharge. Additionally, the hospital system's ER staff has been retrained in postpartum pre-eclampsia response, and every woman who comes back to the hospital within six weeks of giving birth must be seen by an OB within the hour.

I share this story because I hope to inspire others to do what they can to enact change in their local communities. I want to do my part to help guide others on how to use their voices and tell their stories to help raise awareness of maternal health – and galvanize support around solutions. The US maternal mortality rate is the highest in the world among high-income countries; about 700 women die every year from pregnancy- and childbirth-related complications, and as many as 60% of these deaths are preventable, according to the CDC.

This is my call to action for all mothers: You know best what can be done to better improve maternal health in your community, because you have experienced it.  While national efforts through initiatives such as the Alliance for Innovation on Maternal Health (AIM) and Review to Action are incredibly important in setting standards, you can work with your unique systems to make a difference in the lives of all the mothers who come after you.    

More champions, more advocates are needed. We all have a stake in this – not just women, or women who are pregnant, but anyone and everyone with a sister, daughter, friend or neighbor who might one day become pregnant. We can all do our part. We can print, post, tweet and forward the information and tools that are available. We can educate and empower ourselves, our partners and loved ones to know when to get help when help is needed, and while getting that help, to demand better care. Survival is the bare minimum. We want mothers to thrive and feel supported in those critical days, weeks and months post-delivery.  

As Mother's Day month ends, I encourage all who feel as passionate as I do about these issues to find ways to productively channel that passion. I shared my story and the local level changes that are saving lives in my community today demonstrate what can go right when we speak up in a way that gets others to listen, and then, more importantly, to act.

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Dr. Marie McCausland has a PhD in molecular virology and is a post-doctoral fellow in HIV research at the Alan Levine Laboratory, Case Western Reserve University. Marie's advocacy work is supported by Merck for Mothers, Merck’s $500 million global initiative to help create a world where no woman dies giving life. Merck for Mothers is known as MSD for Mothers outside of the United States and Canada.  

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Author Chat: Molly Millwood, To Have and to Hold

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Author Chat: Molly Millwood, To Have and to Hold

In her book, To Have and to Hold: Motherhood, Marriage and the Modern Dilemma, clinical psychologist Molly Millwood explores and illuminates the oft kept silent challenges and complexities women face as they transition into motherhood. Combining her personal experiences becoming a parent, clinical experience as a therapist and extensive research, Dr. Millwood provides a new lens for examining the impact of new motherhood on wellbeing, identity and marital relationships. We had the opportunity to chat with the Vermont-based Dr. Millwood about her new book.

Much of your book is about dispelling “myths of parenthood” – what do you think are the most important parenting myths to bust, and why are they so persistent?

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One reason the many myths of parenthood persist is that we need positive illusions in order to take the leap and have a baby. It is perhaps a strange thing to say, but to some degree the survival of our species depends on these illusions. If we all knew ahead of time exactly how challenging it would be, many more of us might opt out of the endeavor altogether. That is a biological, evolutionary explanation but I think it’s a really important one; it’s important to understand that at a primitive level we are wired to expect good things out of parenthood, and to discount or minimize any negative murmurings we hear.  

If we look at the myths of motherhood in particular, I think they persist because of strong socio-cultural forces that impede honest discourse. In a culture that often views mothering as the ultimate achievement of a woman, and that can value a mother’s skill at parenting over her well-being as a person, it is very difficult for women to talk openly about how much they fumble in their roles as mothers and how depleting and aggravating and confusing it really is.   

I think the myths that are most important to dispel are the ones that shame parents for experiencing negative emotion toward their children. So, for instance, if we buy into the myth of parenthood as the greatest source of joy, and then we find that actually what we feel in the presence of our children is a great deal of boredom or irritation, we then wonder what we’re doing wrong, or what’s fundamentally wrong with us as human beings that we don’t derive more joy from our children. We’d be so much better off if we knew to expect a full, messy array of emotion in relation to our children. 

You highlight the importance of recognizing and grieving the “fundamental sense of loss” a woman faces when she becomes a mother (e.g., loss of autonomy, personal freedom, sleep, predictability, and so on). How can we better prepare ourselves and our fellow mamas for this loss?

I wanted to emphasize the experience of loss in motherhood because there has always been so much emphasis on what is gained. The construct of motherhood is saturated with notions of growth and expansion – there is a growing belly, a “new addition,” a new identity – so that women are often blindsided by the loss, constriction, and stagnation that are just as integral to the experience of motherhood. We need to be able to recognize and name those losses in order to grieve them, but we don’t even have a mental framework for taking that critical first step of recognition.

The human brain has a real problem with dichotomous thinking; it’s either a gain or a loss but it’s not both. I think we need to create a new narrative of motherhood as metamorphosis. It is a change of monumental proportions that involves losses and gains, constrictions and expansions. If mamas-to-be could visualize themselves about to undergo a metamorphosis, they might be much more able to cultivate a stance of curiosity about – and acceptance of – all of the ways they feel themselves changing once their baby is born.   

Why do you think shame is such a prevalent feeling among new mothers, and how can women avoid the “shame hole” you describe in your book?

First of all, isolation breeds shame, and in our culture the conditions of new motherhood are inherently isolating. We are sent home from the hospital or birthing center – and all of the care and support that we had there – too soon. We take leave from work, so we are no longer in daily contact with other adults. Our partners likely take little or no time off work, so they’re not home with us. We are confined to the couch or the bed all day while breastfeeding. It’s tough to pack up and get out of the house with an infant, and so forth. This is a major piece of the shame puzzle; motherhood was not meant to be done alone, and yet for most of us there is a tremendous amount of aloneness in the early weeks and months.

Many new mothers are steeped in both shame and guilt, and I think it can be really helpful to distinguish between the two. Guilt is about doing – it comes from a negative judgment about what we’ve done or not done. So if I snap at my child, I might feel guilty about that. Shame, on the other hand, is about being – it comes from a negative judgment about who we are at our core. So if I snap at my child often enough, I might begin to think, “What kind of person am I to speak so sharply again and again to my innocent little boy?” That gives rise to a feeling of shame, and when we feel ashamed, we most certainly don’t want to broadcast the issue that stirred up our shame.

Shame makes us want to hide, and when we hide and isolate ourselves and keep our thoughts and feelings to ourselves, that isolation and secrecy breeds more shame. So it’s a vicious cycle, and breaking that cycle requires the brave choice of transparency. We have to give voice to whatever it is we’re scared to say out loud. Why is that so important? Because when we take that risk of sharing, we are sure to learn that we are not alone. Others will say, “Me too!” We break through the illusion that other mothers are navigating motherhood with grace and perfection, and we learn that we’re all just fumbling along quite imperfectly. When these messy truths of parenthood are shared without hesitation, we can let go of any shame about the mess existing in the first place.  Shame finds no home in the broad daylight. 

Your chapter on how “It takes a village to raise a mother” speaks to something we talk about often in the Mindr community: the importance of social interconnectedness and finding your tribe. What suggestions do you have for soon-to-be moms and/or those who have not yet found their tribe? Where and how did you find yours?

There are few things more important than this for coping with the strain of early parenthood. I now understand that one of the reasons my own transition to motherhood was so difficult is that I really lacked a tribe. As I wrote about in my book, my husband and I had moved to the opposite coast from both of our families, and all of the friends with whom we had longer histories had scattered. Although we had forged connections with other couples in our new Vermont life, we were the first among them to have a child. There were various other factors that made it difficult for me to connect with other, like-minded mothers, especially in a face-to-face way, and at the time I really did not appreciate what an essential thing that is. 

I think I was under the illusion that because I had a strong bond with my husband, that he and I would weather the storm together and I didn’t need more than that. More and more couples are raising children in this way, in insular environments with no family or good friends nearby, and that has some troubling repercussions. I address this issue in my book – the danger of relying on only your partner during such a trying time. If we have only one person to whom we can turn for relief from parenting and for emotional support, that person will inevitably let us down, and that becomes fertile ground for conflict and resentment.

It was not until our older child started kindergarten in the small town where we live that I began to feel I had a village. I think my life has been incredibly enriched by this feeling of interconnection with other parents who live just down the road, whose kids are friends with our kids, who lend a hand when we need help with transportation or childcare just as we do with them. It was a long time coming, and I feel a great sadness when I think back to myself as a new mother without a village. I want every new mother to know that it isn’t enough to have a partner and some long-distance family or friends. We thrive on face-to-face interaction with other women and without that we truly suffer. And I want new mothers to know that cultivating connection is an extremely worthy use of their limited resources; time and energy are in short supply, but using some of it to be in touch – literally, if possible – with other women will have big payoffs.

What impact do you hope your book will have on mothers, fathers and the larger ‘village’?

I have a lot of hopes for what impact my book may have, but I’ll zero in here on just one. Above all, I wrote this book in order to illuminate and normalize the emotional complexity of the typical transition to motherhood, because this is a transition that has the potential to rattle and rearrange a woman more than anything else she has experienced before. I want people to realize that in motherhood, we discover feelings, impulses, thoughts, and wishes within ourselves that we likely never would have encountered had we not become mothers. This “full catastrophe” of motherhood is the norm, rather than the exception, and it includes a great deal of negative emotion. 

Negative emotion tends to be resisted and pushed away, and in women especially, it is pathologized – it is construed as an indication of depression or emotional instability. In actuality, mental health involves being able to recognize, and allow ourselves to experience, the full array of emotion our human existence brings. I hope my book helps people in that crucial endeavor. I hope that when readers see themselves reflected in the stories I’ve shared, they will find language for naming their experiences and permission to claim those experiences as perfectly natural and understandable.

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World Autism Month through the Eyes of a #MindrMama

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World Autism Month through the Eyes of a #MindrMama

#MindrMama Heather Savatta thought she knew everything she needed to know about autism. However, her perspective and knowledge base changed dramatically when her older daughter was diagnosed while in Pre-K. In recognition of World Autism Month, Heather shares her family's experience navigating the path to her daughter’s diagnosis and what she has learned throughout this journey so far

I didn’t know the signs of autism until September 7th, 2018. Well, scratch that. I thought I knew the signs of autism: a child who is non-verbal, makes no eye contact, shows no emotion, and is in need of full-time care. Since that is what I (thought I) knew of autism, I felt confident I would be able to spot it if I saw it - especially in my own child. But on that warm, sunny September afternoon, picking up my then four-year-old daughter from her second full day of Pre-Kindergarten at a new school in Brooklyn, I was proven very wrong.

At pick-up time in the school yard, I saw my daughter’s new teacher waving me over to where they were standing. I expected a glowing report on how the day had gone, about the new friends she was making or how much of her lunch she had eaten. Instead, her teacher said with blunt force, “I want to let you know that I think your daughter has autism. I used to teach special ed, and I feel quite certain she is autistic.” No pleasantries, no anecdotes from the day. I was speechless. My first thought was denial. How could this new teacher who barely knew my child or my family make such an assertion? I stammered, “I don’t think so, no one has ever said that to us.” The teacher stared at me, clearly waiting for me to continue. “I mean, she has been in preschool for the last two years, and none of her teachers have ever said anything that even hinted at anything even remotely...” I trailed off, unable to finish my train of thought. I ended the conversation just as oddly and abruptly as the teacher had started it, nervously grabbed my daughter’s hand, and turned to face a sea of parents standing in line to pick up their (probably) non-autistic children. I forced a smile toward them and walked off with my daughter in tow, feeling both defensive and devastated in equal measure.

On the mile walk home, while in the presence of my daughter, I called trusted friends and family to tell them what this teacher had said to me. To my great relief, they all seemed to be as nonplussed as I was. “No way, I know her. This does not sound right to me. Can you complain to the school?,” I heard one friend say. “There is zero chance,” another insisted. “She is so smart, how could a teacher say that to you? And after only two days!?” exclaimed a third. Exactly. Exactly. Exactly. My thoughts exactly. And yet…

I spent all weekend researching, emailing my daughter’s past teachers and caregivers, and looking over her reports from nursery school. I spent hours digging through old iPhone videos and matching up her smiles and first words to the developmental timelines I found online to prove she did not have autism. There was no chance this teacher was right! Right? She is the brightest girl ever, I heard myself telling no one. She hit every milestone at every checkup months in advance, I reasoned to our dog. She has no visible delays. She has friends. She hugs me and says, “I love you!” My husband nodded his head in agreement. This teacher had to be wrong, and I needed someone in a position of authority to back me up on it.

I quickly found an amazing psychologist who could perform a private neuropsychological evaluation to rule out what the teacher said, but did this did not come cheap. I was sure that every penny of the out-of-pocket cost of $5,000 would be money well spent. While the Department of Education does have a system in place for evaluating students, I had neither the willingness nor the patience to wait for the agency packet explaining the process and then another 2 or 3 months for results. I wanted answers as quickly as possible so that I could put that teacher in her place.

As a next step, the private psychologist came to my daughter’s school to observe her peer interactions. After a full day of careful observation, the psychologist called me and reported that the classroom setting was loud, overpopulated, chaotic, understaffed, and a much different environment than the small neighborhood preschool where my daughter was previously enrolled. “Aha!” I thought to myself. “This explains everything. We have our answer. The school — which sounds more like a circus — is clearly to blame!” Feeling prematurely vindicated, I phoned all the same people with whom I had spoken on that long walk home on the second day of school, and said things like, “What a relief! It sounds like she just has some sensory issues” and “She just needs more time to adjust.'' Phew, I felt better.

The next step in the evaluation process was for our daughter to do two full days of intense testing of her cognitive abilities and social skills. I was sure she’d ace this. After all, she had always reached milestones very early. I say this not as a biased parent, but as the recipient of many a doctor’s, caregiver’s and teacher’s remarks noting her advanced language and comprehension skills. And even without these endorsements, I knew my child. She could say two words in context by the age of 1. She could recite stories back to me by memorization. She potty-trained earlier than all of her peers. She knew every single detail about snakes.

While we were often told she was smart for her age, it was her normal and ours, which is why I was able to laugh off the quirks that accompanied her intellect. Our pediatrician would ask all the screening questions for the most common signs like lack of strong eye contact, delayed speech, repetitive movements, or meltdowns. None of these signs were present. There can be other signs like impulsivity or compulsive behaviors, but we had less knowledge of these. For instance, she spent so much time organizing her toys into perfectly straight lines (which we found adorable). When she started a 2’s preschool program, we noticed right away that she had trouble communicating with her same-aged peers. She could easily express herself, but she would often be left feeling frustrated when they didn’t understand her complex thoughts. She retreated and spent a lot of time alone, but we never saw this as anything more than her being an independent lone wolf who just liked to do her own thing. She was often in a corner alone with a book or making sure a block tower was perfect lined up while the other kids engaged in imaginative play. When I think back to these observations, I now see them in a different way.

The psychologist called me on the phone in late October to tell us it was time to come in and hear all the results. My husband and I arrived and sat nervously yet confidently in the room waiting to hear what we were expecting (i.e., something along the lines of, “she has sensory issues,” or, “she has a bit of anxiety”).  As the doctor began her explanation, I couldn’t wait and just jumped in with: “So, she doesn’t have autism, right?” With that, the doctor put her papers down and with a heavy sigh, looked me right in the eye and said the unthinkable: “Technically, your daughter does have autism.”

And just like that, I stopped resisting the word “autism.”

What? Wait, what did she just say? My husband and I looked at each other, then back at the doctor who explained that while our daughter is as gifted and exceptional as we had been often been told, she is also socially unaware, lacks key executive functioning skills, and has impulse control issues. And just like that, I stopped resisting the word “autism.” As the doctor spoke the words, I thought back to some of my daughter’s quirks — so fresh in my mind — and it all made sense in that moment. So this is why she is so smart but still runs into the street. This is why she can count to 100 but can’t play side-by-side with new friends. Unlike previous “Aha” moments that had me grasping at straws for explanations and reaching for premature conclusions, this is the moment that stuck. It made total sense.

At times, it feels like a part-time job juggling all the support pieces, tests, paperwork, and red tape. However, it’s a job I happily embrace because just like nearly every other parent on planet earth, I just want what’s best for my child.

This is autism. It’s not black and white. It’s not verbal or nonverbal. It’s a million shades of gray. It was always there. Our daughter was the same sweet, smart kid but now with a new label. I still feel frustrated with how the message from our teacher was delivered on the playground at pickup and hope next time she breaks this possibly life-changing news to others in a less shell-shocking way. On the positive side, we now have insight into the complex neurological puzzle that is our child’s brain. Things make sense a bit more. Now we can work toward supporting her, getting her the right services, and into a school environment that will help her thrive and reach her highest potential. At times, it feels like a part-time job juggling all the support pieces, tests, paperwork, and red tape. However, it’s a job I happily embrace because just like nearly every other parent on planet earth, I just want what’s best for my child.

April is World Autism Month. Like many, I spent much of my life unaware of the broad range of signs in which autism can manifest. I now encourage parents, but really people everywhere, to familiarize themselves with autism. Times have changed. According to the CDC, in the 1980s autism prevalence was reported as 1 in 10,000. In the nineties, prevalence was 1 in 2500 and later 1 in 1000. In 2018, the CDC determined that approximately 1 in 59 children is diagnosed with an autism spectrum disorder (ASD).

I’d advise all new parents to know the signs and raise any odd-seeming behaviors with your pediatrician. Listen to others who observe your child, but don’t rely solely on your child’s school. In our case, the school she’d been enrolled in for two years missed the signs, whereas the school she’d attended for two days immediately spotted them. And the two people who knew her better than anyone since the day she was born — her mother and father — were blindsided! Lastly, have your child evaluated if you aren’t sure or need a second opinion. I am grateful I was proven wrong, and am now able to advocate for my child appropriately in the years to come.

There’s a saying in autism circles - You meet one kid with autism, you have met one kid with autism. The combination of signs and tells of autism look different to every family and every child.

For more information about autism, see https://www.autismspeaks.org/learn-signs.

#MindrMama Heather Savatta is a mom of two. Both of her children's names can be subbed for emojis which the grandparents do not understand, but Instagram gets it. She is a native New Yorker who currently resides with her whole crew in Williamsburg, Brooklyn. Heather is a full-time working mom who takes the ferry to the Financial District each day to try and make digital ads just a little bit better for the internet.

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