Supporting Maternal Request Cesarean - Legal Action

Fingers crossed - I'm hoping a more personal touch to fundraising might increase the amount of support we have available to move forward with the case. Today, I launched a GoFundMe campaign - it provides a good background of the case and the amount of money that might be needed to move forward and mitigate the risk of a loss. I note that any monies raised in excess of what is actually needed will go towards establishing a Community Contribution Company that will support projects aimed at improving the health and well-being of women who are pregnant, childbearing or new moms - and will take over the Maternity Legal Action Fund once established.

Wish me Luck.

Feedback on Ontario's Report "Caesarean Section Rate Review: An Evidence-Based Analysis (DRAFT)" by N. Degani and N. Sikich

Health Quality Ontario is asking for feedback until October 24, 2013 on one of their reports. Here is what I have submitted to them via email:

October 23, 2013

Feedback on: “Caesarean Section Rate Review: An Evidence-Based Analysis (DRAFT)”, N Degani, N Sikich.

Dear Health Quality Ontario –

I am a caesarean by choice mom, a birth trauma survivor, and founder of the facebook group, “Cesarean by Choice Awareness Network” – furthermore, I am a health economist with more than 10 years experience. I am writing to provide feedback on your recent report entitled, “Caesarean Section Rate Review: An Evidence-Based Analysis” from a Caesarean by Choice perspective.

First – let me express that many mothers with a caesarean birth preference are concerned about over-zealous policies aimed at limiting access to caesarean section as they feel that their right to make a medical decision in conjunction with their health care provider about how their baby is to be born will be disregarded. Many mothers with a caesarean birth preference in Ontario (and the rest of Canada) already have a difficult time accessing compassionate care that meets their needs. Those that do find compassionate care – often fear going into labour prior to their caesarean date and having to contend with an on-call OB who does not agree with their treatment plan. Some women are forced into unwanted vaginal deliveries that have significant ramifications both physically and psychologically. Some women who cannot access maternal request caesarean either forego having children that they want or choose to terminate pregnancies rather than face the prospect of an unwanted vaginal delivery.

In terms of the economic impact of caesarean delivery on the system (page 13) – I would urge caution. There is a great deal of variation in the expected costs of caesarean delivery with emergent caesarean deliveries costing significantly more than elective caesarean deliveries. I would also suggest that the expected cost of a planned vaginal delivery is underestimated if it does not include the cost of emergent caesarean deliveries as the vast majority of emergent caesarean deliveries are the result of failed planned vaginal deliveries. Further – I would urge the economic evaluation of caesarean delivery to include the downstream cost savings/expense and that limiting the cost component to the birth and a limited time post-partum likely gives a very inaccurate picture. There are grave and expensive consequences to a vaginal birth that departs from a healthy outcome for both mother and child. In the fall of 2011, the National Institute for Clinical Excellence (NICE) in the UK, updated its clinical guidance on the use of caesarean (CG132) and found that the cost difference between planned vaginal delivery and planned caesarean delivery was just £84 after considering the increased risk of urinary incontinence associated with vaginal delivery .

Lastly, let me express my concern that maternal health policy that is focussed on achieving specific rates of types of deliveries is ideologically based, misguided and undermines the health and well-being of many women and their children. If reducing caesareans results in an increase in the number of late-term still births due to a reluctance to offer a timely induction – that is a worse outcome than a caesarean section. If reducing caesareans results in additional third and fourth degree tears or extensive damage to the pelvic floor – that is a worse outcome than a caesarean section. If reducing caesareans means limiting access to those who would choose it, and that results in traumatic deliveries – that is a worse outcome than a caesarean section. If reducing caesareans results in larger numbers of children grappling with life-long severe disability, such as those that result from intra-partum asphyxia and brachial plexus injuries, those are worse outcomes than caesarean sections.

Further – efforts to reduce caesarean sections often focus on the safest caesareans, planned caesarean sections. These are also likely to be the least traumatic and expensive caesareans. As such – such efforts are unlikely to have the economic impact that is desired.

Maternal health policy needs to shift to focus on the outcomes that matter – physically and emotionally healthy mothers and babies. Policy that is focussed on caesarean rates and managing them does little to address the health needs of mothers and babies and substitutes ideology for quality care.

Sincerely,

Janice Williams, MA (Econ)

Mommy War Criminals and Heroes

I have a real disdain for the "Mommy Wars" - they have turned mothers against one another, and have distracted women from working together to identify and solve the very real problems with which modern women and families must contend. As a result of the "Mommy Wars", motherhood has become a polarized battleground with women arguing and criticizing the specific choices that other mothers make. There's been a whole lot of yelling, and not a whole lot of listening - many mothers have become caricatures and even more have become casualties. Worse yet - the focus on what really matters has been lost and opportunities to realize progress on the issues faced by women who happen to be mothers have been foregone.

This is not to say I do not think that there is not a war to be fought - there most certainly is, but it should not be women waging war on one another, but rather women waging war on the substantive problems faced by women as they contend with motherhood.

I think that the emotional health and wellness of mothers is worth fighting for - this means that resources need to be directed into better understanding and addressing the mental health needs of mothers. There is a lot about modern motherhood that is emotionally toxic to women - from unreasonable expectations about what being a "good mother" is to the stigma associated with admitting difficulty in coping with the circumstances in which a woman finds herself.

I think the physical health and wellness of mothers is worth fighting for - this means enabling women to have timely access to adequate healthcare that promotes and maintains health and wellness. This also means that mothers need to be full partners in their health care and given evidence based information on their choices and empowered to make the choices that best meet their needs and those of their families. It also means that more research on the physical health and wellness of mothers needs to be undertaken - including research on the impacts of pregnancy and childbirth that goes beyond pregnancy and the 6 weeks post-partum.

I think the economic health and wellness of mothers is worth fighting for - many mothers face substantive challenges with regards to being economically healthy. Mothers need tools and support to address the economic challenges they face constructively and to make positive steps towards economic adequacy.

People who blindly promote an ideology and make mothers feel bad about their choices in order to feel better about their own choices - should be considered mommy-war criminals.

In contrast, people who work to support the emotional, physical or economic health and wellbeing of women who happen to be mothers should be celebrated as heroes.

Four Score and Four Years Ago

Four score and four years ago today, the Supreme Court of Canada decided that women were "persons" under the law, after a group of brave women fought to be recognized as such. It was one of the first steps towards women asserting their rights under the law. It paved the way for women to own property and to vote. It paved the way for many of things that women take for granted now. It also highlights how much work there is still to be done, particularly when I think of the treatment of pregnant women in Canada today.

So happy persons day - might we get to a place someday where it is recognized that pregnant women are persons too - persons entitled to informed consent and patient autonomy.

What motivates me?

I view what happened to me as a deprivation of my human rights as a patient and as a woman to make a medical decision for myself and expect that decision to be reasonably respected and facilitated. I gave informed consent for a specific medical procedure (cesarean - or if labour commenced an urgent cesarean) - I knew the risks and benefits of both planned vaginal delivery and planned cesarean delivery and I chose cesarean. When I was deprived of that choice, without warning and without consultation - and a wholly different procedure was imposed upon me (vaginal delivery) - it is difficult to convey how disruptive that was. When I later discovered that such deprivation was without just cause, I was shattered. All my life, I was raised to believe that I had dominion over my own body. I had the right to consent what happened to it. I had the right to not have that right interfered with - and I believed that that right was protected by the Canadian Constitution via the Canadian Charter of Rights and Freedoms. I never believed that choosing to be pregnant would be adequate cause to deprive me of my human rights.

Yet, there I was - stripped of a fundamental human right. There I was, a well-educated, well-informed, confident woman - believing I was entitled to informed consent and respect for my medical decisions and being deprived of both. I never believed it could happen to me, until it did. And, if it could happen to me - then what is to stop it from happening to any other woman? What is to stop it from happening to my daughter?

And after it happened, came the hard questions - What was I going to do about it? What could I do about it? It is all well and good to think that you have rights, but unless you can hold others meaningfully accountable for violations of those rights, did you ever really have the rights to begin with? If I wasn't willing to find some way to hold those who deprived me of my rights accountable - could I expect other women to? If those responsible for depriving pregnant women of their rights to informed consent and autonomy were never held to account, how is it possible for such violations to stop, for the system to change? How is it possible for victims of those violations to move on with their lives without any recourse or acknowledgement that they were wronged in a most serious way?

It is sad when those who find themselves deprived of their rights are left bereft of meaningful recourse - it adds insult to injury. Yet, the way the system currently is, recourse remains tremendously risky and out of reach for many patients who have been deprived of their right to informed consent and autonomy - including pregnant women. In Canada - the healthcare system is structured in such a way that deprivations of rights are almost certain to be free of meaningful consequence. In Canada, defendents (doctors and hospitals) have the full resources of the Canadian Medical Protective Association at their disposal to defend against any patient brave enough to bring forward a claim. Meanwhile patients are left struggling to find access to justice, struggling to find a lawyer to take on their claims, and struggling with the risks that pursuing a claim might involve. In Canada - if a patient brings forward a claim and fails at trial, not only will they bear the costs of their own litigation, but the defendents may also be awarded costs adding further insult to injury. In Canada - damages tend to be so limited that many cases involving deprivations of patient rights, absent catastrophic injury or loss, are simply uneconomic to pursue. In Canada, access to justice for patients wanting to assert their rights is effectively barred.

It is a vicious cycle of human rights violations that will continue. The system will continue to operate as it does, unless it becomes uneconomic to violate patient rights to informed consent and autonomy. It won't become uneconomic to violate those rights, unless patients demand accountability when those rights are violated. Patients will not can not demand accountability, unless they are enabled to do so.

I am determined to assert my human rights and demand accountability for the violation of those rights - the question is, will I (and others) be enabled to do so? Will those who can help make this happen, step forward?

That is what motivates me.

#ForMiriam

Miriam was a mother who paid the ultimate price for having a post-partum mood disorder - she was killed the other week in Washington, D.C.

I do not know the specifics in Miriam's case - I do not know if she had sought help or if she was screened for mental health problems. I do not know if she hid her issues.

What I know is that a young mother is dead - she is not the first, and sadly, tragically - she will not be the last; because of a post-partum mental health issue.

What I also know is that we need to do a better job when it comes to maternal mental health. We need to do a better job of understanding the reasons some mothers face mental health challenges in the months and years following birth. We need to do a better job of identifying mothers at risk. We need to do a better job of treating mothers who face mental health challenges. We need to do a better job of making sure that when a mother faces a mental health challenge - she can access the resources she needs in a timely way. We need to do a better job, when possible, of preventing psychological damage as result of childbirth.

The fact that another mother has lost her life to a post-partum mental health issue is sad and tragic - if we continue to not do anything to do better - that is a travesty.

#ForMiriam

Post-Traumatic Growth after Childbirth Trauma

It has now been more than three years since my daughter was born - and while my recollections of her birth remain highly negative (I suspect they always will be) and at times intrusive and disruptive (thank-you post-natal PTSD) a lot has happened in the time since, that has been and has the potential to be tremendously positive. I am currently at a place where I am more focussed on how to move forward in a positive and meaningful way - rather than being mired in the past. I believe, as a result of the efforts I have made to understand and heal from the experience - I have been fortunate to benefit from what is known as Post-Traumatic Growth.

In the immediate aftermath of the birth - I was over whelmed and distressed. I believed, that I did not matter - that I had no right to decide what to do with my body, that I was not even entitled to feel badly about the birth because I had a healthy baby and there were countless women who would happily trade places with my circumstances. My beliefs about who I was and what my rights were, and how the health care system worked were completely rended asunder. My trust both in the system, and in my own doctors was decimated. I did not feel I could share my thoughts and feelings, with even my husband - for fear of being labeled ungrateful for all that I did have, for fear of being labeled or thought of as a "bad mother". I quickly learned that few would understand and that many would hear my complaints as trivial whining. My initial response was to just try harder at being a "good mother" - after all, I had been told that I was "good at birth" - so why not repress the fact I hated it, that it felt like such a violation, an extreme cruelty. I dove into a mother's group - and tried to see the benefits of natural birth - the thing that most of the women there had aspired to. I suffered silently, often breaking down in the shower or in other fleeting moments that I had to myself and put on a brave and stoic face.

The thing I've learned about trauma, is that repressing it and suffering silently does not work - or at least it wasn't working for me. It bred cynicism. It bred anger. It bred flashbacks. It bred distraction. It bred shame. It bred isolation. It bred depression and anxiety. It bred resentment. It bred helplessness, and hopelessness. When I returned to work - I was marginally functional, and the ample amounts of time in front of a computer looking at health statistics did me very few favours. I needed to do something, so that at the very least, I would not lose my job.

That was when the real work of trying to address and heal from the experience began. I could not continue doing what I was doing (repressing the experience and trying to accept what had happened) - it was making me angry, and cyncial, and negative. If I did not do something that worked - I would risk losing my job, losing my husband, losing everything that mattered in my life - including myself. I owed it to my family and to myself to at least try to not let what happened to me - consume every last part of who I once was.

It was then that I started to really blog. I needed to get what I was thinking, out of my head. I needed to really think about things, I needed to process them.

I also needed to know what really happened (I still do) - and to do what I could to prevent the same thing from happening to others.

I wasn't really expecting everything that has happened as a result of blogging. I wasn't expecting the blog to even be read all that much (we are now at nearly 70,000 hits). I wasn't expecting to change minds on the issue. I wasn't expecting to help other women. I wasn't expecting to meet other women who were as passionate and concerned about the issues facing childbearing women as I was. I wasn't expecting to learn as much as I have learned. I wasn't expecting to create a facebook community of likeminded women "Cesarean by Choice Awareness Network" or be instrumental in the creation of a legal action fund that is focussed on protecting the rights of childbearing women to informed consent and timely access to care (the Maternity Legal Action Fund). Yet - that is exactly what has happened.

Looking ahead, my goals are clear: keep going, keep growing - there is still much work to do.