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Tuesday
Oct122010

Who Are You Calling an Intactivist? (Guest Post)

A Real Intactivist Responds to the Death of Baby Joshua Haskins and the Virtual Mudslinging. 

written by pediatrics advocate and health professional, Jennifer Coias

Intactivists are social reformers and, as such, have a long-standing history of ruffling feathers and challenging the mainstream.  While intactivism is not new to criticism and attacks from those with opposing views, I’ve never witnessed something as volatile as the virtual mudslinging that ensued during this past week.  Intactivists everywhere have been blamed, attacked and even threatened over what appears to be a complex web of lies and gossip as well as a general misunderstanding of the intactivist position concerning the death of baby Joshua.  In order to clear up such a loaded debacle I find it necessary to speak for my community and explain the nature of our interest in the events that lead to Joshua’s death, as well as, to address the backlash concerning our community’s response to the this tragedy.

Before I delve into the details about the community’s true response to Joshua’s passing and the allegations leveled against the intactivist community, I’d like to take a minute to outline who intactivists are and what intactivists do.  I firmly believe that much of this misunderstanding stems from the fact that the general public genuinely does’t understand the work of intactivism.  This ignorance leads to hasty generalizations, unfair accusations, and, ultimately, resentment toward a group of people who have done nothing to warrant such foul treatment.  Readers need to know, first and foremost, that simply being a person who is against circumcision is not the definition of an intactivist.  Simply being a parent who did not circumcise their child(ren) does not make a person an intactivist.  A person who was circumcised as a minor (a victim) and is now upset about what happened to them is also not necessarily an intactivist.  Finally, it should be known that intactivists are not anti-circumcision.  Intactivists are solely concerned with forced circumcision of minors and take no position against the personal choices of consenting adults with regards to their own bodies.      

So what is an intactivist and what do they do? 

-  An intactivist is someone researches heavily to gather scientific evidence for the purpose of  educating society and medical professionals as to:  the functions of the intact genitalia; the proper care and natural development of the intact genitalia; the true, documented risks and complications  of circumcision; and the harms of performing genital reduction surgery on non-consenting minors. 

-  An intactivist is someone who spends a great deal of time reviewing the following: circumcision statements and the ethical code statements of medical associations from around the world, the history of circumcision, the endless studies conducted for the purpose of either supporting or denouncing circumcision, human rights literature, litigation involving circumcision and any other material that involves circumcision.

-  On the internet platform, some intactivists engage in open forum debates for the purpose of using reason, logic and scientific evidence to combat irrational thinking and to debunk common myths about circumcision and intact genitalia, however, other intactivists prefer to seek out parents who are in need of information.  Many intactivists provide parents, both on the internet and in person, with information and resources so that they can make an informed decision before subjecting their child to this non-therapeutic surgery.

-  At the activist level, intactivists participate in marches and peaceful demonstrations around the globe and push for legislation to regulate routine infant circumcision. 

-  Intactivists are primarily concerned with promoting bodily integrity - the right to a whole body - as one of the most essential and basic human rights granted to every person regardless of age, gender, race, nationality, religion, class and/or culture (meaning your body belongs to YOU), thereby giving a voice to our most innocent and fragile of citizens: babies and children.  

The events leading up to Joshua’s death. 

Joshua was the newborn son of Jill and Shane Haskins and his short life was plagued with a series of heart complications due to congenital heart defects CHD (congenital heart defects).  The events surrounding Joshua’s death were posted publicly by his mother, Jill, via her blog; however, have since been removed.  For this reason, I will summarize the events leading to the loss of this loved baby boy.  The day prior to Joshua’s death, his parents consented to an elective circumcision.  The doctor who performed the surgery accidentally severed an artery in the penis which resulted in hemorrhaging.  The doctor applied pressure and powders to attempt to stop the bleeding, but even after hours of doing so, was unsuccessful..  Only after 6.5 hours of bleeding did a pediatric surgeon finally come to see Joshua’s wounded penis.  At that point the surgeon recognized that an artery had been cut and informed the his parents that he would need a couple stitches to stop the bleeding.  That evening Jill recounted the events in a teary, heart wrenching blogpost titled, I Almost Killed My Son.  Jill wrote: 

Right at this moment, Joshua is now back on 85% oxygen through his nasal cannula, his stats are in the upper 60s, he’s drugged, pale, and his crit levels are 41.  They are going to give him until midnight and run his crit levels again.  If they have not risen, then he will receive yet another blood transfusion.   

I should have known better, I should have said no.  I had hoped that he would do well and that it wouldn't be such a big deal. But instead I almost killed my child by consenting....I’m watching him sleep and I’m struggling with extreme guilt over all this.  I put him through it, Shane and I chose to have this done to him.  It wasn’t necessary.  Why did we do that?  Why is this so freaking hard? 

The following day, Joshua went into cardiac arrest and tragically departed this world.  He was seven weeks old. Following his death, Jill’s friend, Carla, reported on the blog that the hospital doctors had,  “reassured them over and over that that circumcision had nothing to do with Joshua’s death”.  Jill and Carla have both reported that there were several mean, attacking comments left by readers in response to the blogposts about Joshua’s death.  From there it was assumed by Jill, blog readers and even some intactivists that the intactivist community or at least some members of the community were heartlessly bullying, threatening and blaming this grieving mother and family.   Jill also tweeted to the Elen Degeneres show, “I just lost my 7 wk old son today. died in my arms. the anti circumcision community is bullying. he died of CHD not circ. help”. 

Intactivists Respond. 

            Why can’t the real intactivist “just shut the f*** up” (as requested by this blogger) about the death of this infant boy?  Well the answer is rather simple: duty.  Duty to Joshua and duty to every other innocent baby boy subjected to genital reduction surgery.  As a community that seeks truth and transparency regarding the issue of circumcision, we have an obligation to speak up when what is being reported is inconsistent with the facts, especially when the facts would tend to show that circumcision was the primary culprit in the death of a defenseless child.   As tempting as it might be to just bury our heads in the sand and let our knowledge and experience go unused, doing so would be a disservice to our society, to parents and to the boys who we work so diligently to protect.  Our end goal is to protect non-consenting minors from the harms of circumcision and to prevent irresponsible actions and decisions, which result in pain and suffering, from going unpunished and undocumented.  Mistakes are a part of life, but unless we take the time to recognized and learn from those mistakes they will continue to happen again and again, as has been the case for little boys subjected to non-therapeutic circumcision.  One could say that without mistakes and taking the time to process and learn from mistakes there can be no true progress.  Based upon the events surrounding Joshua’s death, as presented by his mother, there are enough inconsistencies and red flags that make it well-worth everyone’s time to investigate his death.  Regardless of how things turned out for Joshua, the hospital doctors made some serious errors in judgment which put Joshua at risk, plain and simple.  That said, let’s take a minute to examine some of the facts and inconsistencies as well as address some intactivist concerns regarding little Joshua’s death.  

            When considering the evidence available to us it is virtually impossible for Joshua’s doctors to make the claim that Joshua’s death was entirely unrelated to the complications of his circumcision.  Peaceful Parenting already blogged about the well documented risk of cardiac arrest and hemorrhage resulting from circumcision.  These are real risks for a even healthy newborns and the harsh reality is that circumcision surgery is extremely taxing on little hearts.  Readers should know that professional organizations such as the RACP, AAP, CPS and others have even listed circumcision as contraindicated for unstable infants.  The day prior to Joshua’s surgery Jill blogged:

Now that Joshua is is ‘somewhat’ stable condition, the doctor didn’t want to wait any longer to get it done.  There is a risk that comes with having Joshua circumcised.   Once babies are bigger, they run a higher risk of bleeding too much.  The longer we wait, the higher the risk of bleeding.  So the doctor ordered for it to be done TODAY.

Following his death Jill’s friend Carla posted the news of his death with the following explanation, “Put simply, he has been working his heart since birth. Every day was a stress on his heart and it was just not able to continue”.  So based on his mother’s perception Joshua was somewhat stable; however, based on the doctor’s testimony that everyday was a stress on his heart, it is clear that Joshua was in no way stable and therefore not a candidate for elective surgeries.  Additionally, Joshua hemorrhaged for 6.5 hours before a surgeon came to assess his condition.  His mother described how they were applying pressure and a powder to stop the bleeding but nothing worked because, unbeknownst to her, the doctor who performed the surgery had actually severed an artery.  This level of hemorrhaging causes the heart to work harder and beat faster due to a rise in blood pressure.  Combine that with the extra work the heart already had to do during the actual operation and you have one extremely tired little heart.  A six-seven hour workout for an already fragile heart will have lasting effects, even into the following day.  The heart is a muscle and just as you can feel soreness or tiredness the next day after a big workout, the heart also gets weak and tired after a big workout.  If everyday stress was enough for Joshua’s heart to give out, would it not stand to reason that the 6.5 hours of extra work his heart did the previous day could have been the finger that pulled the trigger of a loaded gun?  How can a medical doctor reason that everyday stress caused Joshua’s death but not the added exhaustion from hours of hemorrhaging the previous day?  Finally, it is still unclear whether Joshua received a blood transfusion, but if so, that is another factor that could have lead to his cardiac arrest.  Cardiac arrest is a well documented risk of blood transfusions.  It is entirely possible that the blood transfusion, which would have been required as a result of the hemorrhaging, could have caused little Joshua to go into cardiac arrest.  In fact, there were a cascade of medical interventions that ensued after the complications of his circumcision.  Given this reality, there are simply too many factors surrounding Joshua’s circumcision complications and subsequent medical interventions to rule out circumcision as a root cause of death.   

            It is highly appropriate to point out that the blatant negligence of the hospital and how that could have played a role in the loss of an innocent life. 

            -Should doctors have ever cut into the most sensitive, nerve-laden part of this fragile boy’s body knowing that he had this preexisting condition and that he was not in stable enough condition to manage even the stresses of everyday living?  Why didn’t these doctors honor their oath to do no harm and to put the interest of their patient first? 

            -Should this NICU infant have been left to bleed for six hours without being assessed by a surgeon when it is well known that even an ounce of blood loss is enough to cause hypovolemic shock and 2.4 ounces of blood loss in a healthy newborn results death by cardiac arrest secondary to exsanguination? 

            -Should doctors have openly pressured Joshua’s parents to consent to a non-therapeutic surgery, claiming that the older he was, the higher the risk, especially considering that most parents of extremely fragile NICU babies are advised to wait a full year before electing to circumcise, at a time when the child is stronger and general anesthesia can be used safely? 

These are all very hard but necessary questions that community members, government authorities and intactivists should be asking Joshua’s medical care providers.  The doctors were the ones who were ultimately responsible for Joshua’s wellbeing.  What is particularly interesting is the way in which the hospital doctors went about reassuring Jill and Shane “over and over” that the circumcision played no role in Joshua’s death.   In yet another blogpost following his death, Jill wrote, “The team of neonatologists and cardiologists made it extremely clear that Joshua's cardiac arrest was NOT in any way related to the circumcision. His heart simply could not work any more. He put up a good fight, but he just simply couldn't do it”.   While it is very appealing and comforting to trust that the hospital is telling the absolute truth to these grieving parents, after examining the blatant negligence, it is highly likely that this hospital is just trying to cover up their own fatal errors to avoid a lawsuit, especially in light of the media attention that yet another circumcision lawsuit would arouse (Mario’s lawsuit).  In other words, we don’t buy it!  These doctors are scrambling to discredit the complications of Joshua’s circumcision as a possible cause of his heart failure but the evidence says otherwise.  Doctors probably see it as a win, win situation.  They never have to face the repercussions for their errors and Joshua’s parents never have to go to bed wondering whether the circumcision was what pushed this baby boy’s heart over the edge.  

            While it might be too late for Joshua, we must think about the next boy who will enter that NICU and about all of the other families with sick newborns who are considering circumcising.  It is a fact that almost all infant deaths from routine infant circumcision are due to cardiac arrest and/or hemorrhage resulting from the circumcision.  It is also a fact that only a small fraction of actual deaths resulting from these well-documented circumcision complications are formally linked to the actual act of circumcision within the medical record of each victim.  This means that while these boys’ records report “blood loss”, “hemorrhaging” and/or “cardiac arrest” there is absolutely no mention of the root cause, circumcision.  This is a huge problem that should concern all parents.  Based on this sketchy reporting by doctors, researchers acknowledge that the current statistical figures for circumcision death rates and complications is far lower than the actual death rates and complication rates.  If parents are making decisions about the fate of their son’s penis it only makes sense that they should also have access to accurate statistical information prior to opting for this potentially life-threatening genital reduction surgery.  At present, parents don't have a clear understanding of the true risks of circumcision because the medical community has not been able to provide reliable statistics concerning death and complication rates.  Essentially, this means that no parents able to give true informed consent when they sign off on genital reduction surgery for their son.  This is yet another reason we need to ask some hard questions when these tragic situations arise. 

            Intactivists are working against more than a century’s worth of misconceptions and tradition.  If we are ever to free our world from the hold of genital mutilation, or at the very least expose the truth regarding the dangers of circumcision, we must ask the tough questions and challenge a medical community that continues to partake in cosmetic surgery on non-consenting minors.  While educating parents is an important step to progress, the single most effective way to end unnecessary circumcision is to remove this non-therapeutic operation from the hospital menu. We can only do this by holding the medical community accountable for their actions.  Gone are the days where people sit back and accept the proclamations of doctors as the gospel truth.  Doctors are not gods and they are not perfect.  Like anyone else, they have their own agenda and they have their own livelihood to protect.  At this point, every medical association in the world agrees that circumcision is non-therapeutic in nature and that there is not sufficient evidence to support routine infant circumcision.  So why then are doctors still doing this to healthy babies and, more importantly, why are they doing it to extremely ill babies?  I challenge readers to seek the answer.  

On the Backlash.

            It is evident that an entire community of professional intactivists (who work tirelessly to accomplish the items listed at the beginning of this article) are being blamed for the voices and actions of a handful of people who happen to be against circumcision or possibly even a few trolls (circumcision fetishists in disguise).  There is little doubt that several attacking, mean statements were made to Joshua’s mother; however,  readers should be reminded that the internet is a rather a big space, with contributors from all walks of life.  When something is posted on the internet there should always be healthy skepticism of the the origin and validity of the statement.  Blog comments and tweets are two particularly anonymous means of communication in which it is very difficult to assess the true intentions and origins of what is written.  Let it be it known that our community does have a few well-documented enemies who troll around and impersonate intactivists for the sole purpose of making us unpopular and creating distrust in our organizations and message.  In particular, there is a user by the name of CIRCINFO on twitter who has created additional fake accounts in order to cause exactly these types of uproars.  Sadly, there are actually individuals, such as this user, who have an obsession with ensuring that pro-MGM (male genital mutilation) propaganda is perpetuated.  While I believe it is quite easy to understand why a particular interest group, such as ours, would be in support of protecting children’s bodies, it is beyond rational understanding as to why any person would spend their time and energy trying to ensure that doctors cut as many children as possible by way of spreading myths and out-dated information on the internet.  The intentions of these particular people are sick and can usually be linked back to circumcision fetishist sites and organizations, such as Circlist.  Finally, as stated previously, simply being against circumcision does not make a person an intactivist.  People who are simply against circumcision but don’t aspire to the goals listed at the beginning of this article often share their opinions in a haphazard manner and create a lot of confusion as to what really constitutes an intactivist.  These pseudo-intactivists simply don’t have the expertise or experience with the subject matter to make well-rounded, articulate discourse.  Any person who made nasty remarks or attacks against Joshua’s mother is not, I repeat, not a true member of the intactivist community.  The intactivist community has absolutely zero interest in attacking, threatening and/or making cruel statements, especially towards parents who have lost children because of circumcision.  Such behaviors are not only fruitless to our goals but they are simply not becoming to a group of people who ultimately wish to promote peace and humanity.

Among my intactivist colleagues, which are innumerable, I have not encountered a single person who is without deepest sympathy for the this family’s loss.  Let it be known that intactivist community has absolutely no interest in blaming Joshua’s death on his parents or attacking a grieving family.  Placing the blame or attacking these loving parents does virtually nothing to further any of the goals or interests of intactivism.  I’ll take a moment to speak for my community... If Joshua’s parents are reading this now, I would like to extend our sincerest condolence for your loss.  No parent should ever be faced with the agony of burying a child, our hearts go out to you and your entire family. 

Jennifer Coias

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Reader Comments (59)

I read another blog, about a family whose daughter suffered from a painful and genetic disease (males who have this disease actually *should* be circumcised btw) that has no cure and would eventually lead to her death. Several months ago, they chose to pursue experimental treatment that could possibly be a cure. At the time, their daughter was stable and doing well, but she passed away last week, likely as a result of the treatment they chose to pursue.

My point in mentioning this is because I think it is entirely too difficult to really put ourselves in the position of parents who have children who have terminal or otherwise incurable diseases (Joshua's disease, if left surgically untreated, is incompatible with life). They makes decisions for their children armed with the best information they have at the time, and sometimes *every* decision they make is life and death.

Maybe the circumcision played a role and maybe it didn't, but no one can know that, and no one can understand the feelings that went into these parents making this decision or any of the decisions they did for their son, including the decision to pursue heart surgery vs. allowing him to pass away shortly after birth. Even if you've walked the road of having a very ill child, you still don't know, because every situation is different.

They deserve compassion.

October 17, 2010 | Unregistered CommenterJen

When you (NGM) first wrote about this tragedy, I spent an evening reading the mother's blog; the whole blog. While I am no medical expert, this child was in no way healthy enough for any kind of surgery, much less an elective one such as circumcision. I realize that the anti-circ and Inactivists have taken up arms over this, but truly the problem here was the doctors performing any kind of surgery on such a fragile life. The fact that he coded little more than a day before they circ'd him was a huge red flag. This child was in no condition for this, period.

And I am sure I will be harassed for this, but we circ'd my son. When I found out I was having a boy, I talked to all of my friends (whom I share most values with) and asked the doctors that we trusted about it. My husband and I ultimately decided to circ and sought a mohel. It wasn't until after he was around a year old that I started to question my decision as I found out more about circ in general. I wish I had been involved in the "natural" community a little more before I made my decision as at least I could have heard more of the other side. Ultimately, I can't change it now, but I am grateful that I know more now.

I value this blog as it raises questions that need to be thought about.

October 18, 2010 | Unregistered CommenterElizabeth C.

It's understandable that a family grieving its son would feel rage and lash out at anyone who disagreed with the treatment choices they made. And anyone who would try to add to their pain with blame or vitriol is not only uncompassionate but unwise--you don't change minds with hate-filled tactics. You just make people shut down and put up their defenses.

I don't know how Joshua's mom will find her way to healing, but I know she has a hard road ahead, and having a little boy of my own, cannot imagine heaping any more pain on her.

But I don't think it's "disrespectful" to point out that medical malpractice may indeed have happened, based on what she herself posted online. Any more than it would be disrespectful to mention that drunken driving might have been responsible for a child being hit by a car. She was in a crisis situation and depended on the medical team around her to give her medically sound advice regarding her son. The bare facts--a medically compromised infant was circumcised--are damning. You don't need to know this child's medical history to know this. There's no guesswork here.

Even if she'd advocated for circumcising him, it would have been their job to refuse her, as ethical medical practitioners, because it was too dangerous. But they didn't.

October 18, 2010 | Unregistered Commenteremjaybee

I don't think *any* of us have said we shouldn't be talking about the medical wrong-doings here. I am head of the line with respect to the crap the hospital and doctor did to (imo) maim... perhaps even kill... this little boy. No, I'm not God or anything... wasn't there... don't know if the story is real or whatever, but IF the story is as it was presented, the yes, iatrogenic mistakes were made. That's my sitting behind a computer screen non professional pov.

October 18, 2010 | Registered CommenterNavelgazing Midwife

@Elizabeth C

I hope you won't be harassed for that. Many of our most vocal intactivists have circumcised their children in the past. What is respectable, though, is that you are willing to re-evaluate that choice. The fact that you are willing to learn new information and question the logic you used in the past. That puts you in a far more open-minded position than most people tend to be.

In fact, I think you are the type of mother who really needs to begin speaking out about this practice. You've been through it and understand how much our culture can shape our opinion on this subject.

It is questionable, isn't it, that doctors who you ask for advice would completely leave out the fact that the foreskin is healthy and jam-packed with unique nerve endings like those found in the fingertips and lips! Knowing that the practice is termed non-therapeutic would also help many, I think. However, this information is just not available unless you go searching for it yourself, and actually read the medical statements and studies done on it.

Anyways, Thanks for sharing your story - I hope you will consider speaking out against the practice. :)

October 18, 2010 | Unregistered CommenterJoel

My heart goes out to this family. My own baby boy is the same age as Joshua, and it is unimaginable to me the pain of losing a little one. But I do think that the medical community needs to really evaluate this case and consider taking a stronger approach against RIC. Parents should be more educated by the medical community and leaving the baby whole should be the default instead of asking "when will the baby be circumcised?" I do not understand exactly why we hold onto this bizarre custom in our country in the absense of any real medical evidence to support it. While I think it is awful to harass the family, burying our heads in the sand and ignoring this terrible tragedy will not help. Every baby boy who is circumcised loses something even if it is not their life.

October 19, 2010 | Unregistered CommenterHeather

great--another person exploiting a mother's story for this cause, and the only people congratulating her about it are the same insensitive people that keep using her as an example when she never consented to it. You have lost my support and help in spreading no circ information due the insensitivity of the people on here. I am ANT-CIRC and ANTI-EXPLOITATION! all this has taught me is how mean and uncompassionate people are to a mother that lost her son and I am ashamed for you

October 23, 2010 | Unregistered Commenterthoughts?

thoughts?
did you even read this post?
There were only a few out of hundreds of intactivists who spoke up about this who were rude and insensitive to this mother.
Did you know that a lot of people in the natural birth and anti-circ community donated money to this family to help them during this difficult time?

Layla

October 27, 2010 | Unregistered CommenterLayla

I just stumbled across this looking over intactivist information and I'm very glad I did! Very well written, and very true! As an intactivist I can tell you all I feel is sympathy for this family, and I in no way want to be associated with anyone who would attack them or make cruel remarks. I'm very glad to see such a great post on the TRUTHS about intactivism. Thank you for writing this.

March 9, 2011 | Unregistered Commenterhillary

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