accreta experience: Lindsay evans

Fear, guilt, grieving, and healing - an unexpected emotional rollercoaster when my accreta delivery went better than expected.

At my six week postpartum appointment, I saw the two lead OBGYNs that had been in my delivery with my son, Ernie. They both greeted me with huge smiles - Lindsay, we still can't believe everything turned out so well.

I hadn't needed the hysterectomy, multiple surgeries, or blood transfusions that had been carefully planned for me. The lead surgical oncologist apologized for the large vertical incision I now had, which my team of seven surgeons ended up not needing after all.

In the end, the placenta accreta and suspected percreta into my bowels, identified in an MRI at 32 weeks, turned out to only be focal accreta. Rather than hours of surgeries and an unknown recovery, a 1x2 cm spot was dissected off of my uterus, which could remain in my body.
"Only" focal accreta. I should be happy! I should be ecstatic! I should feel lucky! And I was, and I still am. I also felt so many unexpected emotions in the weeks and months that followed: guilt, embarrassment, and eventually and unexpectedly, even more intense fear than what I had felt leading up to that day.

Prepping for Ernie’s delivery - fear, loss of control, and overwhelming uncertainty

The birth of my first child was overshadowed in so many ways by the COVID-19 pandemic. During my second pregnancy with Ernie, I was so excited to have a "normal" pregnancy, hospital stay, and postpartum experience that I could celebrate alongside family and friends. Placenta accreta wasn't on my radar until the last three weeks of my pregnancy. At my 30 week appointment and ultrasound, my OBGYN didn't see anything concerning other than still having the placenta previa I had been diagnosed with at 20 weeks. We discussed scheduling my delivery at 37 weeks.

I was surprised to learn that the following week, the maternal-fetal medicine (MFM) specialist my OBGYN was consulting with suggested an MRI out of an abundance of caution because of the lingering previa, C-section 3 years prior, and my age (40). I had the MRI the following week.

I received a call from my OBGYN a week later. I was again surprised to hear from her - not only was it after hours, I had an appointment scheduled the next day. She said, I'm calling tonight because I want to give you time to prepare for your appointment tomorrow, and I wanted to have a plan in place before we spoke. The MRI is showing placenta accreta. There is evidence to suggest that your placenta has grown through your uterus into your bowels. I was scheduled to deliver in one week. I found out that I would need a hysterectomy and likely multiple hours of surgery after. We don't really know what you'll need and what your recovery will be until we get in there. We still need to confirm the gynecologic oncologist's schedule. No, there's no fear of cancer, they're just the most highly skilled surgeons for the level of complexity of your case. A NICU tour was scheduled for us. I was told not to Google - I would see worst case scenarios. Instead, I was encouraged to come to my appointment the next day with any and all questions I could think of, and to call day or night if I had more.

After I hung up the phone, I tried to immediately relay everything I could remember to my husband. I texted my family, some friends, and my boss. We would be meeting Ernie at 34 weeks. After the numb feeling subsided, I felt panicked.

I took the advice of my OBGYN and didn't Google anything. I needed to protect my mental health, and knew I would start to spiral if I read about worst case scenarios. I have someone close to me who was impacted by accreta, and others who had premature babies and long NICU stays. They assured me Ernie and I were in good hands, that outcomes are so much better because I was diagnosed, my doctors had a plan and the resources to support the plan. But even with all the preparations and trust in my care team, like so many facing a placenta accreta spectrum (PAS) diagnosis, I was still so scared about the uncertainty of what would happen to my body, what my recovery would look like, and what Ernie’s outcome would be.

As a type-A planner, this fear of the unknown rocked my world. So, I became consumed by controlling anything and everything I could control. I went into auto-pilot, making lists that got longer as quickly as I checked things off: hide a key so people can check on the dog; make sure my husband knows where the Christmas presents are hiding; write out my daughter’s bed time routine for our family who would be watching her. All things that would have gotten figured out, but I needed to focus on anything other than what would be happening in a few days.

As Ernie’s delivery got closer, I had family and friends rallying around my family in big ways. Work loads at my job were earnestly rearranged - "we got this Lindsay, don't worry about anything here." Family dropped what they were doing to come in from out of state. Meal trains were set up and filled quickly. Preemie clothes and scent bears and books about having a sibling in the NICU were showing up at my house for my kids. Messages of prayers and healing thoughts were abundant. While I was deeply grateful, accepting so much help in so many different ways and from so many different people all at once brought me unease and overwhelm in a way I didn’t expect. It’s hard for me to accept help, so the fact that I was receiving so much made the fear somehow more real - everyone knew how serious and scary this was.

Survivor’s guilt, embarrassment, and imposter syndrome

So then when my outcome was unexpectedly the best case scenario, I shared with anyone who asked how very lucky and relieved I felt. What I didn’t tell people was the overwhelming guilt I felt. All the worry was for nothing. I'm fine! Was I being dramatic to be so nervous? Why did I "make" so many people worry? Why did I “let" so many people rearrange their lives to help? I found myself rereading the MRI results to try to justify all the anguish “I put” my friends and family through. There were tinges of embarrassment that it wasn't as bad as I told people we were prepared for it to be. I felt like because I “was fine,” I didn't deserve all the attention and help we received.

While Ernie's first few weeks were almost exactly what the hospital tour had prepared us for with no additional complications - I was also overcome with guilt that my son was going through his ordeal day after day in the NICU; that “I caused” him to be on all these machines and struggling to breath and eat. And here I was, better than expected. I joined the National Accreta Foundation's Facebook page - then slipped into feelings of imposter syndrome. These people are real survivors! It wasn't that bad for me…I can't call myself a survivor.

But, as I've come to learn through therapy and time, that's what survivor's guilt can do - rob you of the validation of the gravity and trauma of my experience and the ability to mourn a pregnancy, delivery, and postpartum I had planned and hoped for. It made me experience feelings of guilt about things that were out of my control - even though I know I didn't choose any of these things, I still felt responsible for the outcomes. I felt horrible for “causing” what felt like unnecessary drama for my family and friends because after all, everything “turned out fine.”

PTSD and a second wave of fear

A few weeks later, after Ernie was home from the NICU and we were both physically progressing well, I finally started Googling accreta and percreta. As I read more articles and statistics about delivering with PAS, the severity of what “could have been” started to sink in - and my emotional rollercoaster took another dive. Suddenly and unexpectedly, I was increasingly finding myself distressed by the thought of our delivery experience.

Now I would find myself crying, my heart would race, I would feel a pit in my stomach, and my chest felt heavy when I looked at pictures of Ernie in his first days of life. I had a physical reaction every time I talked to someone about why I delivered so early. Explaining why I was starting PT to my physical therapist turned into a sob fest. A neighbor telling me Ernie looks so small for a 3-month old was triggering. I cried walking the halls of the hospital for follow up imaging.

My therapist, who specializes in birth trauma, helped me identify that it was fear I was feeling months later - a normal delayed reaction for many people who go through a traumatic experience. She explained how my brain went into survival mode when I got my diagnosis, through my delivery, and while Ernie was in the NICU. Figure out coverage at work. (Re)pack your hospital bag. Add more emergency contacts at preK. Get the steroid shots. Lean forward and don’t move. Pump every two hours. Be in his room for rounds. Kangaroo holds and bolus feedings. Because I learned so much of the gravity of my situation after the fact, it was a second tidal wave of fear that was hitting me of how serious an accreta diagnosis is, and how much I went through. My body and mind was starting to process the trauma.

My healing journey

I am reminding myself when these feelings of fear arise that I am safe. I am ok.

I am also coming to terms with the fact that even though the trauma of my delivery and recovery was supposed to be a 20/10 and my recovery was “only” an 8/10, it was still an 8/10. And leading up to it, it was a 13/10. And the day-of experience, though I had the best possible outcome, was still a 12/10. All of those different stages of my experience, and feelings that went along with them, were real, valid, and are equal parts of Ernie’s birth story.

As I continue to navigate the roller coaster of emotions around the birth of my second and last child, I am trying to give myself grace, and remember that when feelings come up, more than one thing can be true. I can feel lucky and upset. I can feel grateful that things turned out the way they did and feel robbed of things I wish had happened differently.

I know logically I didn't choose or cause any of this to happen so I am working on being able to let go of the guilt I feel.

Day by day, with the help of those who continue to show up for me and my family, I am getting stronger, both physically and mentally. There are still a lot of feelings and experiences to work through, and I’m slowly coming to terms with the fact that this experience will impact my mental health long after my physical wounds heal, even though my outcome was better than expected. I was lucky. And I experienced something really traumatic - both can be true, and is true for a lot of other accreta survivors.

While having a supportive team of well informed medical providers is necessary to overcome the dangers that accreta presents to our bodies and babies, I believe having supportive and well informed mental health providers is necessary to overcome the challenges PAS presents to our minds. Like accreta, the mental health impacts aren’t always apparent. And like PAS, the mental health impacts are going to be different for all of us. I hope that sharing my story helps others know you are not alone.

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“Accreta Experiences” is a National Accreta Foundation produced series where accreta survivors write articles sharing their placenta accreta experiences and learnings in their own words to help those new to the accreta community.

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Lindsay Evans lives in Buffalo, NY with her husband and two children. She enjoys crafting, baking, and rewatching The West Wing.