it isn't about venting…

Perhaps you think that when I post to my blog it is just because I need to “vent”. It is more than that. I believe I have a voice that needs to be heard. Have you ever searched the internet for adverse stories of natural childbirth(NCB)/homebirth(HB)? You probably won’t find much.

It isn’t because there is no “down” side.

It is because the voices of those on the adverse side have been silenced. Popular forums quickly delete posts made my moms looking to speak out about their “bad” outcomes as soon as the mom starts to mention that she thinks that her loss may be at least partly because of the place and provider she chose for the birth. The only posts that remain are those that speak in strong support of furthering the NCB/HB movement.

One of the biggest disservice that the NCB/HB community does to women is abandon those within the community that face loss. We’re left with half-promises and bills but the “with woman” support is gone when you no longer have a live baby, or in my case when my baby was on life-support.

I knew that when I started to speak openly about Miranda’s story that I faced potential back-lash as many women before me have. I choose my words carefully to be sure I’m not speaking only out of emotion, but I want to give you a glimpse into why I feel it is so important to speak. This week when I responded on a post from someone on Facebook she answered me through a message, I’ve copied and pasted the conversation below (I’ve omitted names other than my own and my daughter).

Lisa, I am so very, very sorry for what happened to your family. I can not imagine losing my girl. I read a lot about alveolar capillary dysplasia. What I read states that it can not be seen on an ultrasound, and that it has a 100% mortality rate.

That, to me, was and is completely out of anyone (but God’s control). I know XXXXXX personally, and she is an amazing woman of God who loves children and loves childbirth. Even if she made poor choices, what happened to your daughter, i believe, was not her fault. So unbelievably tragic… But if it can’t be seen on an ultrasound, and there was a 0% chance of survival.., how could that be held against her?

At the 1st appt with her, she tells the patient of the risks associated with homebirths… It is up to the patient to decide whether or not that risk is worth taking. I personally do not agree with homebirths. I don’t think that they are safe… But it is up to each individual family to decide what is right for them. It’s not up to the doctor, the widwife, friends, family members… But the parents’ alone.

Again, I am so sorry. I pray for you often. And I did not want to offend you with my post. Childbirth is XXXXXX’s life and passion… and I believe that it is bring wrongfully ripped away from her. Please forgive me if I offended you… That is never my goal. I simply wanted people to pray for a friend and fellow woman of God who I believe deserves said prayers.

I responded back with this:

My daughter was not diagnosed as having ACD. She did not have any of the other complications that are associated with the disorder. And the 5 complaints that currently have her license summarily suspended do not include Miranda. They are 5 other cases of negligence and practicing out of scope. Things that are clearly in her control.

Are you a patient of hers? You mentioned her talking about the risks associated with homebirth, but you didn’t mention how those risks are downplayed and dismissed. As a patient of hers she did not disclose to me that she was practicing out of compliance with MD laws. She stripped me of my right to make an informed choice by hiding that information.

I do pray for her, I seek to show mercy so that my Savior shows mercy to me. But I will not stand by and allow people to believe that what is going on is being “done to her” or that she has no responsibility for her part in these losses. That is unfair to the families living with loss and it minimizes the lives of the children that died and suffered brain injuries.

I haven’t heard a response since. But in rereading what she wrote and in seeking wisdom and peace through prayer in the days since my response I’m growing more and more indignant. What she wrote is insensitive and also ignorant. It was probably one of the most condescending notes I’ve received from anyone. The assumption that I should not hold a woman responsible for her lack of appropriate action because it probably wouldn’t have made a difference is absurd. To infer that this sits solely on mine and my husband’s shoulders because it was our decision ignores the fact that the information needed for making those decisions was not freely given. If I didn’t want a medical professional overseeing my pregnancy and birth I would not have sought out a Certified Nurse Midwife. I was never a renegade homebirther. I didn’t blindly trust birth, instead I trusted the provider I chose. She betrayed that trust.

As a parent who buried my child I do find it very offensive that another mother is going to tell me that someone’s choice of career outweighs the value of the life of my child. Would you like to say that to my other five children that are still learning what it means to live without their youngest sister

I have said many times that we did not receive a confirmed diagnosis for Miranda. While ACD was at one point mentioned as a possibility we never received a diagnosis. It doesn’t mean much to me if you say you’ve read a lot about ACD because the fact is that there is not much information available about it. It is extremely rare. Doctors don’t even understand very much about it. Whether or not Miranda had ACD we will never know, but I do know that it was my midwife’s responsibility to perform proper resuscitation. Had my daughter not arrived at the hospital in such a compromised state maybe the doctors would have had a better opportunity to evaluate her lungs, unfortunately she arrived with hypoxic injury and hypothermic, something that was entirely in the hands of my midwife and her assistant.

I don’t care how much you love childbirth, it doesn’t give you a free pass to practice. Just having passion for something doesn’t make you a safe practitioner of it.

The loss of life is not an obstacle preventing you from doing your job, it is a reason to stop and reevaluate why and how you do what you do.

So while the NCB/HB community continues to rally around the midwives who are being held responsible for their practices that resulted in harm they continue to demean and ostracize those of us living in the wake of infant death. My commitment to speaking out about the loss of Miranda is not to keep one woman away from her job, it’s to present an honest look into what was hidden from me. Nothing I do can bring my daughter back or assuage me of the responsibility in her loss that I will always feel.

If you want to choose to birth at home you deserve to know what it looks like when things go wrong. Not every homebirth story has a happy ending.