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Rowan, in the waiting room, just before he is killed

Rowan, in the waiting room, just before he is killed

I just heard this report about 30 minutes ago when driving and had to pull off the road I was so angry and upset. So – finally, here it is; almost EXACTLY what we have been saying about how discrimination led directly to Rowan being killed under the care of doctors at Rady Children’s Hospital.

This is a very well researched and in depth report from NPR’s California Report into the serious consequences of unconscious bias and discrimination in medicine. We have shouted exactly the same message as loud as we can, but have been ignored by nearly all medical professionals, most other people and especially the media, including San Diego’s NPR station (Rowan’s mother contacted NPR six times over the past year).

I agree that this story should be newsworthy, but why did NPR leave Special Needs Discrimination out of their report? Why was Rowan’s story (who was killed by an almost identical method of discrimination) ignored, while this story was highlighted?

Rowan and those with special needs and disabilities are just not deemed newsworthy … despite suffering exactly the same stereotyping and discrimination as other minority groups. They are just …….. invisible.  Well, they aren’t invisible to me, and they certainly shouldn’t be to society.

If you choose to read this report, and are a person who has decided to ignore Rowan’s story, I hope you consider what YOUR biases are. To say you don’t have any unconscious biases is to ignore the problem that this report describes in detail, providing concrete research and examples from both doctors and patients to back it up.

Discrimination in healthcare was real for Rowan, and it was the direct cause of his death. Rowan’s life mattered. Everything that happened to those interviewed for this report happened to Rowan. For the most part they were lucky and survived. He did not and the world is a lesser place without him.

http://ww2.kqed.org/stateofhealth/2015/08/03/doctors-struggle-with-unconscious-bias-same-as-police/

To learn more about Rowan’s story please visit here

Rowan’s mom recently put out a request across Facebook to all of the healthcare practitioners and medical researchers who have linked to us on social media, but have yet to comment on Rowan’s death. She asked them one direct question about the discussion of discrimination in Rowan’s death versus the recent discussions of death related to racial discrimination by police officers  –“Why does the world pay attention to one, and not the other? What is the difference?”

This question stimulated an active and public conversation, but of those participating, only ONE was a medical professional who chose to reply publicly. The silence from those in the medical and bio-medical community has been and continues to be deafening.

It is important, especially for those of us who work in medicine, to speak up publicly so that others can hear YOUR arguments, MY arguments, OTHERS arguments and come to their own informed conclusions. This is not about winning a debate or convincing the other party that you are right and they are wrong. Without an open conversation that clearly shows what everyone involved really thinks, it is impossible for change to occur. Nothing healthy grows in the dark, and as we have said previously, the consequences of silence are profound.

Recently we were fortunate to have a healthcare professional share his opposing views with us privately. He expressed a common viewpoint in medicine today, as well as a common societal viewpoint about what constitutes discrimination. Viewpoints I believe are critically important to talk openly about.

Coming away from our conversation, it was clear to me that there is a widespread misunderstanding of what really defines discrimination in healthcare.

At the core of his opposing argument was the belief and acknowledgement that the modern practice of medicine is very generalized, and has flaws, but that everyone is treated equally.  That everyone should receive the best care possible and doesn’t is a very real but completely separate problem and does not relate to the existence of discrimination, be it blatant or subtle, within a flawed system.

The explicit flaw of this argument is based on the false assumption that there was no conscious or subconscious intent to do harm based on Rowan’s diagnosis of Williams Syndrome. Instead he was treated equally, as a good provider should do for everyone.

But, the reality is that Rowan needed to be treated as an individual who was different, but equal. Rowan required simple accommodations to keep him safe and alive because of his unique needs. This is true for all children with special needs. Drugs, procedures and even environments that are safe for typically developing children have been proven to be harmful and potentially fatal to children who are physiologically different as a result of a different genetic make-up. Rowan was different.. and therefore could not safely be treated the same as other children.

Instead, the doctors refused to acknowledge that Rowan had different needs, and denied basic accommodations for Rowan, which led to his death.

The best example to illustrate why that lack of accommodation was clearly discriminatory comes from our school system.  In order for a child with special needs to have the same educational opportunities, certain accommodations must be made.  Most children can be treated basically the same in the classroom and end up with a comparable education.  However, if a child with special needs is treated the same way and those accommodations are NOT provided, due either to overt prejudice or systematic failures, their quality of education is significantly lower. That is discrimination. This is not just my opinion. This definition of discrimination in education against those with special needs has been consistently upheld by the US Supreme Court, in cases such as Mills Vs Board of Education.

This is exactly why acknowledging that Rowan had WS, but going ahead and treating him the same as other children anyway, despite a year long battle from his parents demanding those accommodations, is discriminatory.

Rowan should have been valued just as highly and as equally, but should never have been treated the same as all other children. He should have been given specialized care and consideration, because his needs were very different from a typical child. This is the very essence of “Different, but Equal”.

One established definition of institutionalized discrimination is:

Discrimination that disproportionately affects specific groups or individuals, which has been incorporated into the structures, processes and procedures of organizations, either because of prejudice or because of failure to take into account the particular needs of different social groups”.

Rowan’s doctors failed to take into account his “particular needs” at nearly every step in his care, and children like Rowan are “disproportionately affected” by the negative consequences of “equal” treatment, regardless of their age.

So, for Rowan, and for many others like him, the argument that the modern practice of medicine is very generalized but that everyone is treated equally can in fact make an effective case that Rowan’s death was a consequence of discriminatory practices.

(Everything discussed in this post also only addresses one part of the discrimination in Rowan’s story, in which we believe that Rowan was also not treated as equal: this can be found discussed further here)

I know that many will still have opposing views after reading this. I hope you will share your arguments just as publicly as we will.  I invite you to do so below.

3 doctors Don't see, don't speak and don't hear anything

Rowan’s life and death tells a story, but this conversation is about much more than Rowan.  It is about all of the other wonderful children that are still here, and the families who love them with all their hearts.  Just as we will always love Rowan.

The frustration..

Just the other day, I received an email from a parent, saying how she wished there was an available list of precautions, that parents could present, when anesthesia was being considered for a person with Williams Syndrome.  There is a list of precautions, and it has been available since 2004, nearly a decade before Rowan was killed.

The 2004 protocol for use of anesthesia in patients with Williams Syndrome is listed here: in our Report to the California Medical Board

Reading this note, I also learned that the main WS support group in the United States is still under-publicizing the risk (despite research like this: Research from Australia in much of the rest of the world) due to fear of “liability.”

After reading this, I was left with a wide range of emotions.  I felt overwhelming sadness, that our message (and that of others) has not been heard.  I felt anger, toward the hospitals and the WS leaders in the US, for what, at this point, could only be a conscious effort to withhold information from individuals with William’s Syndrome and their caretakers.  I felt devastation, that Rowan is not here to show his own worth to those who are ignorant.  I felt immense grief, for the horrific death of my beautiful son, and the inconceivable knowledge that the silence surrounding it continues to prevent his death from helping others.   And I felt alone, not part of any community.  Instead, an outsider – whose status as bereft, frustrated, and “just a mother” looking for blame – prevents me from finding a place, or being heard – just like before.

And the hope..

I also received an email that told a story.  The story goes like this:

A man looked at Facebook, and saw our petition. That man showed his wife, and she went to our website. They read our story, and cried, and they understood.  They understood every part of our story, from the medical negligence, to the special needs discrimination, to the importance of my “No”.

The woman is a person who asked herself, “What can I do?”, and bravely decided to do something.

This woman happens to be visiting the Washington DC next week, and she is taking our story with her.

She doing what she can.  Maybe she won’t be able to do anything, but she will try. She will try to get it into the next person’s hand. She will try to play her part.  And maybe, we will reach one more person, who will in turn, reach one more.

To that person who is the friend-of-a-friend-who-knows-the-man, to the man who showed his wife, to the wife who is going to Washington, I am thankful.

I have seen a wonderful example of how each small part matters, each piece adds up to a bigger piece.   And someday, all of those pieces could add up to a whole.  I have seen how a simple card, or a simple share, can make a big difference.

And I have seen how, through the frustration, there is a glimmer of hope.

On its way to Washington DC:  Rowan’s Informational Page Final

Special Needs Discrimination in Healthcare is real, and every ounce of me wishes it wasn’t.  My heart sinks a little more each time I find an article like this one, verifying the reality of our story:

“One in four participants said they had been encouraged by a medical professional to abort, and many received inadequate information and little compassion.”

http://www.washingtonpost.com/posteverything/wp/2015/06/16/down-syndrome-screening-isnt-about-public-health-its-about-eliminating-a-group-of-people/?tid=pm_opinions_pop_b

It makes me realize that the importance of this conversation is all the more real:

Rady’s Birth Defect Program

But then, I read on to the comments section. And I saw the hate. And I realized a harsh truth.

That I have been naïve.

I read words like “burden to society”; “they might be cute when they are young,” but..; and more that I can’t write, but I hope you read.

And I realized. This blood test isn’t anything new. It is just a different, more efficient, way to do what our society has been doing for years. And this author isn’t actually asking parents (to-be) to stop aborting their special needs children. Instead, she is asking us to be honest.  Honest about how we want the leaders of our society to view the worth of those with special needs.

And hundreds of commenters rose to her request. Honesty they gave her. The honesty of hate, for those they deem worthless, or trying to take something from them.

And, after all this time, I realized. I was naïve. I thought the silence was perhaps discomfort, or wanting to believe doctors can’t fail, or fear of conflict, or something.. anything.. else.

What I didn’t realize was that the silence is hate. The view of my own loved and cherished son as worth less. Or even despised. Or, at best, maybe the silence was just an act of condoning the hate.

I don’t have a word to describe how much this truth hurts. I have spent much of the past 24 hours crying, no sobbing, at the idea of this truth.

But I appreciate the author for asking the question. I appreciate the audience for answering. For taking the opportunity to speak the unspoken truth of how our society views those who don’t meet our ‘expectations’. Because the knowledge, as painful as it is, is better than the silence.

And in this one article, I am thankful that the author and the commenters answered our plea: “Let’s talk about it”

And I remain, thankful for the few..

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“It was real and true” (by Rowan’s 6 year old sister) – This is the truth of what the silence did

Compare/contrast these two situations:

1.  A typical child goes in for a routine examination.  The child’s mother tells the physician, “My child cannot have penicillin.”  In fact, the mother has been mentioning that for over a year.  The physician says, “I know what I’m doing” and gives that child a shot of penicillin anyway.  The child dies, and the mother shouts “You killed him!”

2. A non-typical child goes in for a routine examination.  The child’s mother tells the physician, “My child cannot have anesthesia.”  In fact, the mother has been shouting that for over a year.  The physician says, “I know what I’m doing” and gives that child anesthesia anyway.  The child dies, and the mother shouts “You killed him!”

What is the difference between these two stories? (Yes, I already know that penicillin would likely kill someone by anaphyllaxis and anesthesia would likely kill someone by cardiac arrest)

What is the difference in society’s reaction?

The comments section is open..

My husband, Rowan’s father, is faculty within the University of San Diego’s Department of Medicine.

What does that mean in my world?

That means:

  • My husband comes home at night to tell me that the man who recruited him has walked into his office and says the hospital has a “moral imperative” to apologize for Rowan’s death.  But then this same man walks back into the office next door, and refuses to speak publicly.
  • My husband comes home at night to tell me that the man who does his review has said “I’m sorry that your son was killed”, and has sat and told my husband of the little girl with Down’s Syndrome who had appendicitis.  Her discriminatory doctors sat back (knowing that she had appendicitis) and allowed her to become septic, and a month’s stay in the ICU was necessary to save her life.  But this same man walks out of the review, and refuses to speak publicly.
  • When I bring Girl Scout cookies to my husband’s office or stop by for lunch, only the lab tech and the receptionist will look me in the eye, much less mention my son or his death.
  • A physician that drives directly from my husband’s office to Rady Children’s Hospital, regularly, has never mentioned my son’s name, and has actively avoided discussion of his death.
  • When my husband and I widely spread thorough research on special needs discrimination in healthcare NO SCIENTIST OR MD within his building even acknowledges that we are discussing it.

Why does this “See No Evil, Hear No Evil, Speak No Evil” approach among scientists matter?  Why does it matter whether the MDs/scientists DOING the research give a shit about the MDs/doctors USING the research?

Because of this:

http://www.nytimes.com/2015/03/20/science/biologists-call-for-halt-to-gene-editing-technique-in-humans.html?_r=2

Because today, my husband’s colleague walked into my husband’s office with plans to use this new genome-editing technique that  alters DNA in a way that can be inherited – in MICE.  (For those unfamiliar with science, it goes something like this: fruit fly, then mouse, then a few more steps and a few more regulations, then humans.  That is not an attempt to be scary, that is just a simplification of how it works).

He wasn’t planning to do this research next year, or next month, but today.

This scientist had NOT, as of today:

  • Been aware of the ethical debate associated with this research (much of which took place among researchers prior to this letter or this science being published, and is significantly downplayed or not mentioned in this article)
  • Been aware of the article posted above (which is so widespread that I first saw it on Facebook)
  • Given any thought to the future use of this research
  • Given any thought to the potential future use of the research in any kind of discriminatory fashion
  • Given any ethical thought, or considered any adverse consequences, to what he was about to create
  • Given any thought to addressing current discriminatory practices in medicine

And there is absolutely nothing in place to require him to do any of these things before walking in his lab and doing this research.  (Nothing, aside from the hour-long lecture my husband gave him yesterday).

People wonder why I’m still angry?  Aside from the obvious?  Because I live this insanity everyday.  The insanity of everyone saying “oh, well” while continuing to provide the potential means to make the discriminatory practices in healthcare worse.

I remember that ethics class that I took as an undergraduate.  You know the one where you talk about thinking of the consequences of your actions before doing them.  Or was that kindergarten?

Has the responsibility to give ethical thought to your actions been lost in science and medicine?  My experience over the past year says yes, though my fingers are crossed that my experience does not define medical science as a whole.  Because I hope that no other mother has to wake up every morning to the ultimate consequence of the reality of what progress without ethics can do.

I’m not claiming to be unaware of the potential value of this research, but shouldn’t we be addressing this first?  To learn more about Special Needs Discrimination in Healthcare, please visit here.

Copyright2015@rowansmile

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I hate a lot of things in life.
I hate that two doctors, together, killed my son.
I hate that they didn’t see him for who he was, and I hate that they didn’t see his worth.
I hate that they didn’t listen to me when I tried to protect my son.
I hate that even Google is talking about the things that Rowan’s own pediatrician refuses to.
I hate silence, and the crimes that result.
I hate apathy, and the destruction that happens because of it.
I hate that I had to teach my daughter about death.
I hate that I have to teach her everyday about silence, and apathy, and why bad guys sometimes get away, and why some people don’t have to say they’re sorry.

And I’m UN-apologetically angry.
I’m angry when someone is silent, and I will not tolerate it.
I’m angry when someone is apathetic, and I will not tolerate it.
I’m angry when someone won’t say they are sorry, and I will not tolerate it.
I’m outraged when someone hides his crimes, and I will not tolerate it.
I’m outraged every morning when I wake up envisioning my son’s death, that I witnessed, all over again.
I’m angry every night when I cry myself to sleep.

But I look into my daughter’s eyes, and I can’t teach her to hate.
I won’t hate all doctors, because I can’t teach her to discriminate.
I won’t hate people who are silent, because I can’t teach her to give up her own voice.
I won’t hate people who are apathetic, because I can’t teach her that she can’t make a change.
I won’t hate those who don’t take responsibility, because I can’t teach her to run away from her own.

I am angry. And will teach my daughter that there are some things that are wrong.
I am outraged. And will teach my daughter that there are some things worth being furious about.
But I will not meet hate with hate. Because if she learns that lesson, then I have lost her, too.

 

 

 

Want to make a difference?  Visit How To Take Action

To learn more about current research documenting Special Needs Discrimination in Healthcare visit: Special Needs Discrimination – Healthcare

Copyright © rowansmile 2015. All Rights Reserved. No part of this website or any of its contents may be reproduced, copied, modified or adapted, without the prior written consent of the author. Rowan was killed at Rady Children’s Hospital as a direct result of the carefree and unnecessary use of general anesthesia for an equally unnecessary and “routine” outpatient diagnostic procedure.. Without his parents’ consent. It is okay to post a link to this page.

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Innocence and joy

Radiating life and worth, curiosity and love

There for everyone and the world to see.

I saw it, felt it. Vibrantly, from the moment I first held you ….. how could you not?

But, those who didn’t …. couldn’t were always there.

Weighed down by the barriers in their heads, blocking out your light.

Only a little was let in, weakened and changed by false assumptions, poisonous stereotypes.

I only even saw your light, not the scales on the eyes of others, the dark wax in the ears of the deaf.

But, that light! What joy! I will carry it forward for you forever.

For current research documenting special needs discrimination in healthcare, please visit:  Special Needs Discrimination – References

Want to help?  Visit: How to Take Action

Copyright © rowansmile 2015. All Rights Reserved. No part of this website or any of its contents may be reproduced, copied, modified or adapted, without the prior written consent of the author. Rowan was killed at Rady Children’s Hospital as a direct result of the carefree and unnecessary use of general anesthesia for a “routine” outpatient diagnostic procedure.. Without his parents’ consent. It is okay to post a link to this page.

I like doctors, I really do.  I’m married to a doctor (PhD).  I have friends who are doctors.  I’ve worked for doctors.

But then I read articles like this, and I think c’mon doctors, what happened?  I knew you in college.. going off to medical school, with great plans to help the world.  What happened?

http://www.huffingtonpost.com/karen-m-wyatt-md/5-things-most-doctors-get-wrong_b_6655978.html  (4 out of 5 of these things existed in Rowan’s care)

http://www.nytimes.com/2015/02/17/upshot/in-hospitals-board-rooms-are-as-important-as-operating-rooms.html?fb_ref=Default

What is going on?

Let’s face it:  If you found out that I knew my co-worker killed someone and I didn’t speak up, you might think that I was a pretty horrible person.  If the organization that I worked for had huge deficiencies that led away from its primary mission (and even killed people), you might think, what kind of person are you to ignore them?

But you are expected to not speak up, and you are okay with that?  Really? 

C’mon.  I’ve shared lunches with you.  I’ve been to your Christmas parties.  Rowan was there, too.  As a group, you are the kind of people who expect and demand respect, in all parts of your life.  Yet you walk into your offices every day and are afraid to face the things that destroy the very fabric of why you are doctor?  That work against the very reason you became a doctor in the first place?

Or are you afraid?  Maybe I’m being presumptuous. Maybe it isn’t fear.  Maybe I’m wrong about why you became a doctor.  Why did you?

I hope that you find the courage.  No, I hope you do what you should.

The conclusion of the “investigation” into Rowan’s death

Because you and I both know that Rowan is not the only one,

Rowan’s mom

 

 

Copyright © rowansmile 2015. All Rights Reserved. No part of this website or any of its contents may be reproduced, copied, modified or adapted, without the prior written consent of the author. Rowan was killed at Rady Children’s Hospital as a direct result of the carefree and unnecessary use of general anesthesia for a “routine” outpatient diagnostic procedure.. Without his parents’ consent. It is okay to post a link to this page.

 

 

 

Somehow, in the fog of immense grief, we allowed this message to be overlooked. The hospital, the people around us, ourselves (in doubt of our own selves and each other), everyone allowed this message to be diluted.. and to be lost.
And it may be the most important message of all:

I said NO, over and over again,

I. SAID. NO.

I said NO sternly as your intern watched wide eyed, surprised at a patient objecting,

I. SAID. NO.

I said NO quietly as I pleaded with you on the phone,

I. SAID. NO.

I said NO angrily as I walked away from your colleagues,

I. SAID. NO.

I said NO nicely as he played happily with your stethoscope,

I.  SAID. NO.

I said NO in my worried requests for a different option,

I. SAID. NO.

I said NO in my insistence on your credentials and your assurance that he would be safe,

I. SAID. NO.

I said NO for an entire year.

I. SAID. NO.

I said NO in a just plain, loud, clear, and simple “NO”, and it was not misunderstood.

I. SAID. NO.

I. SAID. NO.

I. SAID. NO.

I. SAID. NO.

I. SAID. NO.

I am Rowan’s mother.  MY NO MATTERED S

and I am Rowan’s father.  MY NO MATTEREDS

 

Copyright © rowansmile 2015. All Rights Reserved. No part of this website or any of its contents may be reproduced, copied, modified or adapted, without the prior written consent of the author. Rowan was killed at Rady Children’s Hospital as a direct result of the carefree and unnecessary use of general anesthesia for a “routine” outpatient diagnostic procedure.. Without his parents’ consent. It is okay to post a link to this page.

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