Saturday, October 26, 2013

"Birth is beyond our control"

I wanted to share more with all of you the story of Acacia. Many readers had questions. I know certain questions will never be answered but in my conversations with Jenny (Acacia’s mother), I felt more of her perspective needed to be shared. 

My questions are in blue. Jenny's responses are in black. The bold areas are my emphasis.

To read the story of the birth and death of Acacia, click here

Thank you, Jenny, for being so brave to share your story.


Can you explain what your birth “philosophy” was going into your first pregnancy? What I mean is how did you view the process?

I didn’t have a cohesive idea about birth, but I had a sense that it was “natural” and therefore straightforward.  (I thought the same thing about breastfeeding, by the way - what a hoot that was.)  I heard that “interventions” and fear during labor could cause problems for the baby, so of course I wanted to avoid all that.  Although I did worry about all sorts of things going wrong, I also felt that “natural is better.”

My childhood experiences with authority had been very negative. People with power over me had used that power to hurt me. I wasn't able to articulate this at the time, but I wanted to protect my baby.  My gut sense was that to keep the baby safe, I needed to avoid people with "power," including doctors or midwives. I had very severe anxiety, and because it was untreated, it prevented me from accessing prenatal care - I was able to see a doctor about three times in the whole pregnancy.  

How did everything end up going at the hospital for the birth of your first? How did you handle it emotionally given your anxiety? How did you feel about it at the time and afterwards?

The hospital scared me.  Sometimes I thought about not going.  Surely we’d know if something was going wrong, right?  And if nothing was going wrong, wouldn’t it be ok to just stay home?  I didn’t want something bad to happen to the baby at the hospital.  Steven wasn’t thrilled about this idea, but said it was my body and therefore my choice.  I promised him I would go if I had any doubts.

When I finally went into labor, I had a couple big drips of blood as I was dilating.  I knew about bloody show, but something about the bloodiness of the blood made me uneasy, so I asked Steven to drive us to the hospital.  

The blood was normal and everything was fine.  I had an excruciating 10 hour labor, and I pushed for 2-3 hours.  She’d had some meconium in her waters, and once she was born, the nurse thought she was more blue that normal, so she had to go to the warming/resus table immediately.  They brought her back to me and I got to hold her, and I was so happy.  

Everyone was absolutely kind to me and explained everything.  No one lectured me or yelled at me.  They said they were glad I came to the hospital even though I was afraid, and in the end, I was glad too.  

Going into the birth of your second, did you still feel the same about birth, about it all being a pretty safe process if it was natural?

I had therapy in between my first and second pregnancies.  I still had a lot of anxiety, but I started from the premise that we needed prenatal care.  Because we had a child already, I knew how precious the baby and I were, and how much our family needed us to be well.  The stakes were more real.

I chose a hospital based midwifery group, and Steven came with me to many appointments.  I met all twelve midwives, and I cried coming and going sometimes, because it was not easy work to talk about my boundaries or my fears.  But by the end of my pregnancy I was very comfortable with my midwives.

I did still think "natural is better" and that the more interventions I could avoid, the better. I was still afraid of ending up with a c-section.  I still believed that birth was basically safe.  As my due date approached, the midwives and I were able to talk sensibly about non-stress tests and post-dates inductions and rates of stillbirth after 42 weeks.  I scheduled my first non-stress test and prepared myself for the idea that I might have an induction afterwards.  I tried not to dwell on my biggest fear, which was that I would go for the NST and end up with a c-section.   Despite knowing there are many good reasons for a c-section, in my mind, there was nothing in between the two events besides a diffuse fear that the c-section would be “unnecessary.”  I ended up giving birth two days before my 41 week NST.  

Do you feel you took good care of yourself during your pregnancy with Acacia?

With Acacia?  Oh yes.  I ate well; I was sensitive to my body.  I did special exercises to prepare my body for birth.  I was kind to myself so my kindness would overflow onto her.  I took warm baths.  I was pleased to be getting prenatal care.  Right before she was born, I took long walks among magnolia trees, and I felt very nourished by the sight of the flowers.  I used to grab her leg through my belly and hold it.  She had a very robust feeling leg.  Compared to my first pregnancy, I was unworried.  I was comfortable with my decisions about where I was going to give birth and with who, and I felt confident in my body.  I still worried about the pain.  I still worried about “the cascade of interventions.”  I made plans to help me be comfortable in the hospital.  I was looking forward to meeting my daughter very much.

You have spoken to me at lengths greater than what has been shared here regarding your extreme anxiety with hospitals and doctors and authoritative figures... to those out there that are dealing with a similar type of anxiety, do you have any advice you could share? To those who seem the greatest fear is the "cascade of interventions," do you have any thoughts you could share here as well? Any thoughts on how to advocate for oneself?

That’s tough.  Anxiety is kind of like living in a box.  Sometimes you know there’s a bigger world out there, and sometimes you can see it through the cracks, and sometimes you have no idea you live in a box.  Being in the box feels rational because anxiety has it’s own internal logic.   My anxiety once worked to protect me, even if it was maladaptive for my adult circumstances.  Learning that my anxiety served me taught me that I could work with my fear.  If something made me feel unsafe, I learned how to find safety instead of just running away.  Counseling helped the most, but medication can also be a useful tool.  There’s nothing shameful about having anxiety, but it’s unpleasant to live with and worth addressing when it interferes with your life.

As far as the “cascade of interventions” goes, or more accurately, my fear of “unnecessary interventions,” it’s normal to be frightened of things that are unfamiliar, and which involve blood and surgery.  I think it would have helped me to understand that it wasn’t my responsibility to predict the future. Decisions that might seem less than ideal in hindsight could be the best, most ethical decisions at the time.  Successfully averting an emergency can sometimes leave little evidence of the danger that inspired the interventions.

Birth is beyond our control, but we react to it as best as we can.  Not every choice is, or can be a choice.  We can react to labor pain, or birth complications, but we don’t get to choose whether or not they occur in the first place.  Confusing autonomy with control hurts women.  It’s very easy to become crushed by disappointment, guilt, shame, and hurt if we measure our autonomy by how well we control the uncontrollable instead of by how we react when the uncontrollable occurs.  

It’s hard to give a really nuanced answer to the question about self-advocacy because every person’s situation is different.  For a person who was taught that having boundaries is dangerous, communication is not an easy thing to do.  Systemic factors such as racism and classism also impact the way that many women in the U.S. will experience and access maternity care. Any answer is going to be limited by these and other factors.

It can be helpful to ask as many question as you need to, before the birth, during, and after.   It’s also helpful to go into birth with a set of ordered priorities, so that if a complication arises, you know which goals you hold paramount and which you can set aside.  You do have rights; knowing them, and knowing who to complain to can help as well.   As much as it is possible to have a respectful dialog with care providers, that will help too.  

After the birth and death of Acacia you started to share your story with others... I have seen firsthand some of the appalling responses... Knowing the complication, I know that it is not something that can be remedied at home... no matter who may have been there with you during delivery, you would have been transferred.... and yet some seem very desperate to believe that it could have been prevented with the right person with you, as if a midwife or the right paramedic could remedy *any* potential complication. Why do you think that is?

I'm a grieving mother. Acacia’s first coos, first words, and first steps will never exist. To share her with the world, I talk about her birth and her death.  For some people, the idea of a baby dying is incomprehensible and it’s very natural to try to push those possibilities off and say, “That couldn’t happen to me.  I would make better choices.”  It’s too scary to think about otherwise.  There may be an element of hubris, too, in thinking it’s possible to be superhuman in an emergency, or thinking that reading something on the internet makes one an expert.  But I think it’s mostly fear.

People don't have to worry about the unthinkable happening to their babies if they can make up a narrative in which it wouldn't. After we learned what it was, I read everything I could find about my daughter's complication.  I questioned her doctors and my midwives endlessly. I made up a hundred different stories about how she could have lived, but in the end they are just stories. If we could have done anything different, we would have. To this day I wish I would have skipped the bath and just gone to the hospital.  This is wishful thinking too, because there was no indication that I needed to be in the hospital that early in my labor.  

How do you feel about birth now, after Acacia?

I don’t count on the process of birth.  My body is strong and wonderful, but it’s falliable.   I count on my care providers to be sensitive and cautious, and I count on my own resilience.  My third child is due in the spring, and I am doing what I can: prenatal care, screenings, ultrasounds, taking my vitamins, exercise, and a practice of gentleness.  Perhaps I will get to walk among the magnolias again.  I plan on going to the hospital at the first sign of labor.  Fear comes to me occasionally, but it’s an old friend, now.

My main concerns are brain damage and death.  My midwives know that if the baby doesn’t seem to be tolerating labor well, I prefer a non-emergency c-section to waiting and increasing the chances of an emergency developing.  This is no guarantee that the baby and I will make it through with minimal injuries, but it’s enough for me.

I'm struggling with how to ask this question as I don't want it be a question used to get an answer to scare pregnant women, so I'll just ask it and see where it goes... if you could say anything to someone who believes that birth is "as safe as safe gets" or who believes that "trusting birth" is all it takes to have a good outcome (and perhaps with a midwife present), what would it be?

Each of us makes our decisions based on what levels of risk we are comfortable with.  I can’t tell others what to do, because it’s such a personal decision, but I can share about what it feels like to be on the other side of a birth accident that occurred outside of the hospital.  

I have made my peace with my daughter’s death, and have found pockets of incredible beauty and holiness in our time with her.  This is a mystery to me, because that peace includes acknowledging that there's nothing beautiful about an innocent baby suffering. There was nothing wonderful about deciding to withdraw life support interventions from our dying, brain damaged baby so she could have a peaceful death.  

Even if absolute risk may be low, the impact of birth complications can be catastrophically high.  I can’t control whether or not these complications will occur, or even that I will be in the right place at the right time, and yet, I still will try because I think there is value in trying to avert things that are terrible, even if we can't guarantee we will be successful.  There’s value in trying to avert death or terrible injuries, even though all life ends in death and we cannot avoid all injuries.  Uncertainty is part of being human. This might sound bleak, but it's a very peaceful place to be.

"Magnolia" photo courtesy of fionaandneil

Friday, October 11, 2013

Acacia's Story

Today’s post is a guest post from a loss mom. This is Jenny’s story (in her words) of the birth and death of her daughter, Acacia.

"I've been deliberately vague about the complication that my daughter suffered because some people have been unable to resist the urge to pick over the details of her birth and suggest that if we'd had "better" paramedics, or a midwife, something could have gone differently. This is both unhelpful and unrealistic. The paramedics' quick thinking meant we had a chance to get to know her before she died. But no matter what anyone tells you, paramedics do not have operating rooms, surgical teams, anesthesiologists, blood transfusions, neonatalogists, neonatal nurses, or respiratory therapists hidden away on that ambulance.  They just don't.  And neither do midwives.  The best, most experienced homebirth CNM in our area transfers at the drop of a hat exactly because she hopes to avoid injuries like the one my daughter suffered. 

Unfortunately, what happened to my daughter was something no one could have predicted.  My daughter's complication is one of those events every OB and midwife fears.  The only thing that could have made a substantial difference to her outcome was a change in our location prior to the event - if we'd been in the hospital instead of in my kitchen. 


Before I had my first child, I was terrified of doctors.  I had unrelated trauma that made trusting anyone an ordeal.  What I read and heard about natural childbirth left me believing that in a hospital, I would be medically battered, strapped to a bed, shamed, touched without my consent, and bullied into accepting interventions I did not want.  Nevertheless, when my time came, I asked my boyfriend to drive us to the hospital - "why" would be too big of a story to go into here.  Imagine my relief when I was treated with kindness, dignity and respect.  We brought our firstborn daughter home at three days old.

When I was pregnant with our second child, I felt that my previous experience in the hospital had been decent enough to repeat. Many of my peers had or were having home births and I eagerly listened to their stories. But as nice as they sounded, I decided that three days in the hospital would allow me to rest up before launching into the challenge of being a mother of two. Planning a second hospital birth was a housekeeping decision. I was not particularly worried about safety because through playground chats and reading about natural childbirth on the internet, I'd come to accept the notion that "birth without interventions is best," and that women should "trust birth." Underneath it all was a belief that birth is basically safe. When I talked about birth with other moms, we sometimes wondered if this intervention or that intervention had really been necessary. But we seldom, if ever, talked about death as though it were a real possibility.

Then my daughter, my second child, died because one of those "rare" split-second, every minute counts birth emergencies. Despite living just minutes from two hospitals (mine, and the one with the best NICU in the area), we did not make it in time. My labor was irregular then suddenly intensified. Just as I was putting on my shoes to go to the hospital, I started involuntarily pushing and my water broke.  I couldn't make it down the stairs, so my boyfriend called 911.

The paramedics arrived promptly and by the time they did, she was crowning. They did all they could while I gave birth there on my kitchen floor, paralyzed by labor and unable to speak. But as close to the hospital as we were, we might as well have been an hour away. 

We didn't know at the time, but moments before our 911 call, she experienced a complication. Because of that complication, she did not breathe at birth, and was in need of some very specialized help - the kind of help you can only get from a well-oiled pediatric team in a hospital. The paramedics attempted to start her breathing, gave her oxygen, cut her cord, took her, called ahead in the ambulance, and were met by NICU staff at the entrance of the ER. My boyfriend says a a swarm of people began treating her the moment she arrived, and she was not yet ten minutes old.  

My daughter lived four days, and despite being treated with a cooling blanket, she suffered total brain damage and the breakdown of her body following the long oxygen deprivation. Together with her care team, we chose to have her healing supported by technology as long as there was a possibility she could actually heal. However, as the days went on, we learned that her kidneys and her gut were destroyed. Her other organs were following close behind and her body could not recover. We brought family and friends to meet her, and then we chose to discontinue any intervention that did not add to her comfort.  Her dad and I got to spend several hours holding her and watching the sunset with her.  These were some of the most beautiful and holy hours of my life.

After I came home without my daughter, I searched for stories similar to what had happened to her and was horrified to find that they mostly happened to women and babies who'd had planned home births.  Getting out of the house always took longer than anyone would have imagined, and devastating brain damage was always the result. Women who happened to be in a hospital when similar birth accidents occurred generally got scary crash c-sections and mostly - though not always - took their living children home.  I met a mother in the NICU whose baby was born in the hospital, didn't breathe for eight minutes, and received the same cooling blanket treatment my daughter would receive. Her daughter was going home healthy and neurologically intact. What other differences there were between her daughter and mine, I can only guess, but any baby who doesn't breathe for eight minutes was almost certainly in trouble before birth too. It took eight minutes just to get my daughter to the place where she could receive the breathing help and blood transfusion she needed.

At one time, I had fervently believed that my body knew just what to do, but I came to resent every time I'd ever read "trust birth" or "birth is safe" or "our bodies were made to do this" or "all you need is instinct" and "interventions are what cause complications." Every time that I read, "If an emergency happens we will just go to the hospital." As if it were that easy. The paramedics had arrived to my house before we anyone suspected anything was wrong. I also resented the fact that I had feared a c-section more than I had feared my child dying. I resented the fact that I had worried about the "cascade of interventions" more than I had worried about brain damage. I had been worried about all the wrong things.

In the hospital, we were treated with more compassion than I have ever encountered in my life. From the moment we arrived in the emergency room to long after we left our daughter, newly dead and swaddled, they focused not just on the physical, not just on her health and mine, but our whole family system, our feelings, her comfort, our comfort, her humanity. Her essential value as a person was at the center of every decision, from the one to try to save her, to the one to let her go.

The doctors and hospital midwives were more than willing to admit that they didn't have all the answers, and that sometimes things happen that can't be prevented or fixed. They refused to speculate - if only I'd done this or that. All they would say is, "If you had been in the hospital, we could have done x, y, and z. We can give you percentages on how often that is successful, but we can't promise your outcome would have been different. I wish we could. I wish we could tell you this will never happen again. But we're not gods." And in a small way, that saved me because it was the truth. The truth is we never had a guarantee.

I'm not telling my daughter's story to say that women should not have home births - that's not my decision to make for others. But I am telling her story because I think that the notion that "birth is safe as life gets" is a shaky one. No decision should be made on that premise. Birth is not as safe as life gets. Mothers and babies can die and the human race will go on. Most of the time, people get lucky, and things go off well enough. When shit goes bad, it has the potential to go really, really bad. We cannot control whether our babies survive birth by eating a special diet, doing the right stretches, or with positive thinking. I was low risk as can be. My baby didn't die because I failed to trust birth or my body. She didn't die because unnecessary interventions interfered with her natural process. She died because sometimes, in the absence of the right kind of help, and sometimes even despite it, birth kills.

I miss her little face. Not a day goes by that I don't regret the fact that I never heard her cry, that I will never hear her cry, or that I never got to see her as the healthy baby she was before she was born.

My boyfriend lost his child. My older daughter lost her sister. Our brothers and sisters lost a niece. Our parents lost their grandchild. My friends lost a dear new baby to love and watch grow up.

She wasn't mine alone to lose.”

Baby Acacia after resuscitation

Click here to read more from Jenny's mother on her experiences and thoughts regarding birth - where they once were and where they are now, after their loss.