Sunday, October 10, 2010

Who Are You Calling an Intactivist?

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

By Jennifer Coias © 2010


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 not 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 defect (CHD) and specifically: hypoplastic left heart syndrome. 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 a few of the events leading to the loss of this loved baby boy, as told by his mother.

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 multiple 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?

Early the following morning, 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. There were a few pro-circumcision people who told others that intactivists were "behind it" and telling their readers to bully Joshua's parents. Jill tweeted to the Ellen 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 was 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 the 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 significantly increased 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. This past May, Peaceful Parenting posted an article which synthesized research 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 medical and health 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 each and every day 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 much 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 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 and cortisol spikes (stress hormones that tax the heart muscle) the previous day?

Finally, it is still unclear whether Joshua received a blood transfusion, but if so, this is another factor that could have lead to 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 cause of death.

It is highly appropriate to point out that the blatant negligence of the hospital, and to question how these actions 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 almost seven 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 2.3 ounces of blood loss in a healthy newborn results in 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, should they choose to do so, 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 (Baby Mario’s lawsuit). In other words, we don’t buy it! 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 may 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 their 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 surgery. This is a huge problem that should concern all parents.

Based on sketchy reporting by hospitals in the U.S., 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 life, 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, the majority of parents do not 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 are 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 in North America. If we are ever to free our society 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 posing as intactivists to cause trouble). 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, unliked, 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 this type of uproar. Sadly, there are individuals, such as this user and others, who use their blog, their Facebook pages, and their Twitter accounts in their obsession to ensure that pro-cutting propaganda is perpetuated, and/or that well informed intactivists are routinely and constantly bashed and made to look like "terrorists."

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 striving to ensure that doctors cut as many children as possible by way of spreading myths and out-dated information on the internet, and blocking/banning/deleting the response comments made by intactivists. 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 mentioned previously, simply stating one is "against circumcision" does not make a person an intactivist. People who are simply against circumcision but do not 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 someone as an intactivist. These pseudo-intactivists simply do not 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 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 for all.

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 in 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.


~~~~


Information on newborn circumcision-related death in the United States:

Bollinger, Dan. Lost Boys: An Estimate of U.S. Circumcision-Related Infant Deaths. Thymos: Journal of Boyhood Studies. 2010;4(1):78-90.

Baker RL. Newborn male circumcision: needless and dangerous. Sexual Medicine Today. 1979;3(11):35-36.

Death From Circumcision

Circumcision Information Resource Pages - Death

Doctors Opposing Circumcision - Statement

Circumstitions - Complications

NOHARMM - Complicaitons Incidence

National Organization of Circumcision Information Resource Centers 2010 newsletter

Partial list of those who've died during/post-circumcision

Doctors Re-examine Circumcision

What Your Doctor May Not Tell You About Circumcision

Circumcision: The Hidden Trauma

Chidren's Genitals Under the Knife


Circumcision: The Rest of the Story

Several texts examine past research on this subject here

Today more baby boys die from circumcision surgery each year in the United States than from choking, from auto accidents, from suffocation, from SIDS, from (recalled) sleep positioners and from (the newly banned) drop-side cribs.


Additional Articles by Jennifer Coias:

The Phony Phimosis Diagnosis

Circumcision: Already Illegal?


The Nuts & Bolts of HIV in the USA and why Circumcision Won't Protect Men

Basic Care of an Intact Child


Painful Urination During Prepuce Separation

Turn Your Crib into a Co-Sleeper

~~~~

12 comments:

  1. Thank you so much for posting this.

    ReplyDelete
  2. I thank Jennifer for distilling this situation's essence into this perfect essay.

    I would add a few things:

    - While intactivists do seek protection for minors so they can make their own informed decision as adults, I think we also need to protect adults who might make a coerced or poorly informed decision.

    For example men with phimosis in the US might be told they need a circumcision, while men in non-circumcising cultures would be offered options like leave it alone, use gentle stretching techniques, or undergo non-amputating preputialplasty. I think it's within the scope of intactivism to work for standards of doctor/patient dialog preceding even adult elective circumcision.

    - The hospital is claiming Joshua's artery was nicked as if this is exceptional, when in fact foreskin amputation always severs some major blood vessels.

    - Note that the RACP of Australia and New Zealand doesn't endorse infant circumcision, but they say when it is elected, even healthy babies should wait until they are 6 months old. For a doctor to claim risks rise if the procedure is delayed is just outrageous.

    ReplyDelete
    Replies
    1. INFORMATION: The human foreskin is easily retractable at puberty. Not so before puberty. Do not attempt to retract the foreskin until the body is ready. AT PUBERTY, simply apply a non-adhering tape or cloth to hold the retracted foreskin and it will expose the glans. The skin will remain retracted if repeatedly held back. DO NOT CUT OFF THE SKIN!!! If the young man likes to have an exposed glans, it is his choice and within his ability. Let him make the choice. DO NOT USE A KNIFE, USE TAPE OR CLOTH. You can even let the cloth cover the glans until it has become accustomed to the air and has lost its sensitivity. Does it hurt? NO!!! Will you get an infection? NO!!! Is it safe? YES!!!

      SEND THIS TO EVERYONE YOU KNOW...CHILD ABUSE IS YOUR RESPONSIBILITY.

      Common Sense goes a long way.

      Delete
  3. Thank you for this. While my heart hurts for this family, he was not their property -- he was a person, just like any other victim. And I do believe he was a victim of these negligent (or worse) doctors.

    As an intactivist, I have nothing but grief and sorrow for this mother. Our work is focused on preventing the suffering caused my infant circumcision. The mother is suffering, and Joshua's final hours were filled with suffering.

    I believe some of the people who have expressed anger toward her are probably those who have experienced such suffering on their own. Their efforts are misguided; their judgement is clouded by their emotions. My heart hurts for them, too.

    Mostly though, Jennifer, I would like to thank you for calling attention to the motives of PRO-circ crowd. Not the uninformed parents who choose this for their sons, but those who actually ADVOCATE FOR infant circumcision. "We MUST take knives to babies' genitals!!!" There is something DEEPLY unsettling about this.

    Thank you, thank you, thank you.

    ReplyDelete
  4. I've been amazed and outraged at the level of unhealthy debate this situation has incurred, particularly in the form of social media. Mothers banding together to 'fight the crazy intactivist bullies.'

    Thank you for writing this article. I don't know ONE person who is against infant genital mutilation who would want to cause this mother any harm. If anything, I know my heart grieves for her and her family.

    I think you are right - the mother doesn't want to think that the circumcision could have directly led to Joshua's death, because that would make her assume guilt. The thing is, I don't think she NEEDS to feel guilty. Unfortunately, ritual infant circumcision happens a lot in the US - so many mothers and families see it as the norm. Presumably she knows other boys and men who were circed with no problems (aside from the loss of the foreskin, but you know what I mean, I hope!).

    Even if she begged the doctors for a circ, ultimately I think the blame lies on the medical professionals. They offered her poor advice, they botched baby Joshua's surgery, etc.

    I can imagine that this mother must be agonizing over her decision, anyway, even if logically she understands she was placing her trust (and her son's well being) into the hands of her doctors. I know I feel guilt and worry over parenting decisions I make that have far less severe consequences!

    Sorry for this being so long. I think I just wanted to say that I personally believe in a happy medium. On the one hand, I definitely think Joshua's death needs to be investigated so that the people responsible can be HELD responsible. On the other hand, I hold the deepest sorrow and empathy for this family.

    I do not think the two viewpoints are diametrically opposed.

    ReplyDelete
    Replies
    1. His mother will probably try to blame herself for letting it happen even though it wasn't her fault.

      Delete
  5. I guess I'm one of those who is "simply against circumcision." I like to think of myself as an Aspiring Intactivist, but I'm not there yet. I'm in the process of educating myself and figuring out how exactly how I fit into the movement.

    However, even though I might not be a full-fledged Intactivist (yet), I don't run around carelessly or inappropriately dispensing my opinion. I think you'll find that there are a responsible many of us in the "simply against circumcision" category. I like to think that we contribute to the movement, even if it's on a smaller scale (maybe by simply sharing our own experiences).

    Anyway...I don't mean to split hairs, I just felt like a distinction needed to be made. Your post made it seem like only Intactivists who meet certain standards should be allowed to speak up in public.

    ReplyDelete
  6. Thank you for such a well written and thoughtful assessment of this terrible event. If circumcison of children were not legal, as it should be, we would not have entered into such a challenging conflict and Joshua may still be alive. I agreee that, ultimately, the medical and nursing staff are responsible for this occurring and they need to accept the responsibility to put an end to it. No child should be subjected to having parts of his or hers sexual organs cut off.

    Thank you for your great site. Don't give up your efforts to educate and protect!

    ReplyDelete
  7. very well written, thank you. i am against circ but was smart enough to keep my mouth shut when reading some call to actions against intactivist bullies. some day perhaps i will be knowledgeable enough to know how to handle that type of situation.

    ReplyDelete
  8. I never thought about it till I was pregnant with my first son. I then thought about my husband and the massive scar on his penis and his inability to masturbate and the lack of sensitiity around the glands. I then thought about all the comments he made in our marriage about how when growing up he hated that he could not pleasure himself, fist feelings about being broken.

    His mother said 'that is what we were told to do back then and you didn't argue about it'.

    So yes Im sorry for the loss of this lovely baby boy and I have no desire do be cruel. I do question the doctors that think it's ok to circ a newborn with a heart problem and a mother who thinks it's worth the risk.

    ReplyDelete
  9. Thank you. There are a number of trolls and pro-circ advocates that are very threatened by the intactivist movement. They keep busy spreading misinformation and false claims all over the web. Social reformers always face a backlash from those who do not want to change. I have been an intactivist for 28 years and never have I called people names or been cruel to them for being ignorant. My job is to calmly educate with accurate information.

    ReplyDelete

LinkWithin

Related Posts with Thumbnails