In hopes that this apology will someday reach someone who deserves to hear it:

I’m sorry. Rowan’s Mom.

Rowan

Rowan

This article from the Robert F Kennedy Center for Justice and Human Rights sums up everything I have been saying about silence, denial and lack of action in the face of discrimination and injustice.

http://rfkcenter.org/effetto-spettatore?lang=en

“What hurts the victim most is not the cruelty of the oppressor but the silence of the bystander”  – Elie Wiesel.

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..

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Camping with Rowan

This weekend, we went camping in the rain. In the morning, as the sun came out, a sister and brother wandered into our campsite and peered into our tent to say hello to our daughter.
We emerged for introductions and to play, and as the little brother followed Dan, the two girls went about the typical “I have that, too” introduction that six year olds do. The morning was going along smoothly, and as we prepared breakfast, C was happy to have two new friends. Eventually, her new friend (whom I’ll fictionally refer to as “S”), picked up my phone off the table, pushed the button, and saw the photo of C and Rowan.
S: “C has a little brother, too. Where is he?”
Me: “He died”
S: “Why?”
C: “The doctors gave him anesthesia and they weren’t supposed to”
S: “That is sad”
C: “Yeah”
S: “I share a room with my little brother”
C: “Me and Rowan shared a room, too”
S: “Let’s go play in the meadow”
C: “Okay”
They wander off, exploring, playing on logs, saving the Earth picking up trash, and taking turns pulling S’s little brother around with a bungee cord (don’t ask me why, it seemed like a fantastic idea to all three of them)
Next, they all wander to the campsite next door, and run into S’s mom.
S: “Mom, C has a little brother that died”
C: “The doctors gave him anesthesia, and they killed him”

As I overhear, I hold my breath. The world seeming to slow down around me, as so many previous scenarios swim through my mind. Will the mom say something to try to dampen or change reality? Will she pull away C’s new friend, leaving C to need comfort at another disappointment? (Yes, these things are the norm, rather than the exception)

“That’s very sad” says S’s mom. And both girls move on to the next item on their list.
A little while later, we parents meet. Parent introductions that are always more difficult than kids’. Eventually, our story gets mentioned. I slip them our card that says boldly ‘Special Needs Discrimination in Healthcare’, and I hold my breath again. She reads it, puts it in her pocket, and says “I’ll read it”. “How long ago?” she asks, followed by “Wow, that’s just yesterday”. “Yes”, I answer, “it all depends on your perspective, but it feels like yesterday to me.” And a few awkward moments of us all staring silently into the meadow.

A little more small talk, and then the conversation becomes easier. We chat about the storm, and about how we each bought our cars for camping with two kids. We chat about work, and school, and the trips we took with Rowan. They tell us how their toddler is always hungry, and C talks about how Rowan always tried to eat everyone’s food.
And it was easy.

As the day passes, each family packs up our belongings, as the kids imagine they are gazing at the stars.
And, instead of witnessing their relief at the exit, I’m handed a paper with an email address, “Let’s go camping again”.

Friends, afraid, become strangers.

And strangers, not afraid, become friends.

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

I keep getting that question from people, and I don’t know how to answer.  Because I don’t have the answer.

If you really want to know, give me 20 minutes of your time, and I’ll try to answer the best I can.

Ready? Grab a timer (hint, there is one on whatever device you are using) and scroll down..

 

 

 

 

 

Is your timer set for 15 minutes?  Sitting down in a quiet room?

Here is your answer:

 

 

 

Ready?  Think of one of your children.  (Don’t get up, just think of one)  Scroll down..

 

 

 

 

 

Ready?   Start your timer and Scroll down when you are…

 

 

 

 

 

 

 

 

BOOM!  Somebody just killed your child. 

 

Don’t get up.  Put your computer down, your phone down,  close your eyes… don’t open them again until your timer goes off.  Just imagine it.  Really imagine it.  You will never, ever see your child again.  You will never, ever touch your child again.  BOOM!

15..

14..

13..

12..

11..

10..

9..

8..

7..

6..

5..

4..

3..

2..

1..

When you are finished..  don’t get up, the challenge is not done..scroll down.

 

 

 

 

 

 

The question isn’t for me to answer.   It’s for you to answer.  Did you do it? Could you do it?

If so, tell me, when would you stop grieving?  When would you stop fighting?  When would you be “happy”?

WAIT!  Don’t get up yet!  The challenge isn’t done..

 

 

 

 

 

 

Now call a friend, or go to the store.. talk about cookies, or the weather, or springtime, or Easter, whatever you want.. but remember!  don’t say your child’s name! don’t talk about what happened!  Shhh..

 

 

 

 

 

 

 

 

 

 

 

 

 

And then, go hug your child.  And look at your watch, how long has it been?  Did you make it that long?

(PS – If you really want to know, that is that best I can do to describe the scenario that I relive every morning, of every day, as I wake from sleep.. without the timer or the hug at the end)

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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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.

We didn’t have a choice.  We didn’t.  We simply didn’t.

Yes, in hindsight, we could have taken Rowan to a different town, or Australia.. where proper precautions would have been taken.  If we had known what we know now, we certainly would have put our entire family on that plane.

But I read stories like this one.  I read lots of them.  And I realize that this story isn’t about whether you agree with Cassandra, or her mother, or the doctors.

It’s a story about who is in charge.  And it’s not the parents:

http://www.economist.com/blogs/democracyinamerica/2015/01/medical-consent?fsrc=scn/tw/te/bl/ed/cassandrascatch22

And it wasn’t me.

I pleaded, I begged.  I made phone call after phone call.  Talked to doctor after doctor.

Do it without anesthesia.. “No”

Make him an in-patient.. “No”

Do more tests beforehand.. “No”

Find a better way.. “No”

Listen to me..NO!

“We are one of the best hospitals in the world.  We know what we are doing.”

“There is no other option.”

When they didn’t listen.. they didn’t just take away my son.  They took away my voice.  They took away me.

When people turn away, or don’t take action.. They don’t just turn away from my son.  They don’t just turn away from my loss.  They turn away from me.

And I matter.

“I’m not asking much… just your voice!” the sea witch told Ariel.  Is that really what it takes to live in the human world?

There is absolutely no relief when a bereaved parent can say I told you so.  It only causes more pain.

An article on alternative, and better, methods for heart imaging:

http://www.utsandiego.com/news/2015/mar/14/ct-scan-stress-test/

Outraged?  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 as a direct result of the careless 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.

Today has been a strange day.

This morning I was angry, because a friend (a nurse) posted about how she got away with running a stop sign because, as the cop who pulled her over said, “I never give out warnings but I respect your profession and I understand you are tired so have a good night” . And fifty of her friends liked and applauded her.. Did she not realize that this cop just stated the very reason that we were not able to find justice for our son’s death? (I contacted the police department five times over the past year, and they never responded). Did she not realize, as she concentrated on her successful get-away, that I have met the mother whose child died because someone else “slowed down” for a stop sign? (In actuality, she is a nice person, who has been very supportive since Rowan’s death, and would probably never guess that her post would lead to any adverse reaction.  In fact, I wouldn’t have given the post a second thought just one year ago).

And this morning I was intensely sad, because I finally ate the cupcake that my son should have eaten on his 3 ½ birthday.

And then, I put away everything else I was supposed to do today, and I spent my time reading.

I read an essay from a teenager in foster care, whose social worker raped her repeatedly, and got away with it without reprimand, even after she tried to press charges. After her story, she stated that telling her story “has made me sure about myself”.

I read an article about “getting through grief by hanging onto yourself”, and I read a post about the “gifts” that grief gives us.

And then I realized something. Something that I have worked on realizing for the past few months, but I realized that I hadn’t quite gotten there.

Oftentimes people say that grief gives them the ability to love more freely, or more openly. But I don’t think that is true for me. Rowan gave me that ability when he was born. I have never loved the world around me more than when I saw it through his eyes. I will never love the world more openly than when I felt the warmth of the smiles that came to people’s faces when he greeted them with a loud “Hi!” and a wave from my arms.

But my grief has given me a gift. It has given me confidence, just like the teenager in foster care. It has given me a voice that was always there… But is now even stronger than before.

It has given me a voice that has made some turn away. It has given me a voice that has drawn some closer. It has given me a voice that is not always pleasant. It has given me a voice that is confident. It has given me a voice that I am proud of. It has given me a voice that I am thankful for.

It has given me a voice that matters – for me, for my daughter, for Rowan, and (hopefully) for a few others.

Grief has given me a gift, the very same gift that allows me to hang onto the “myself” within my loss… my voice.

Dear Grief, I will never thank you for this gift, but I will do my best to use it wisely.

 

 

 

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 as a direct result of the careless and unnecessary use of general anesthesia for a “routine” outpatient diagnostic procedure.. Without his parents’ consent.