Archives for posts with tag: medical negligence

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.

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.

Peace as the world commonly understands it comes when the summer sky is clear and the sun shines in scintillating beauty, When the pocketbook is full, When the mind and body are free of ache and pain.. but.. true peace… is a calmness of soul amid terrors of trouble, inner tranquility amid the howl and rage of the outer storm..

Martin Luther King Jr.

We will never be able to lose the vision of our son being gassed to death before our eyes, without even the simplest of care or precautions afforded to other children.. because of who he was wrongly perceived to be.  But we will work to find the peace that lies within that terror.

We will always be thankful for, and will always remember, those who faced that terror along with us.  The friends and strangers who left their comfort zones to face a horrible injustice.  The doctors, researchers, and nurses who risked their own reputations to stand up for what was right.  Though we have been unsuccessful in our efforts for justice, we at least have the knowledge that there are courageous people who chose to step up and act.  Through you, and with you, we hope to find peace.

Thank you, with Rowan in our hearts

Copyright © rowansmile 2014. 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 careless and unnecessary use of general anesthesia for a “routine” outpatient diagnostic procedure. It is okay to post a link to this page.

Twelve months after Rowan was killed, we mark the end of a chapter.

We now know, for certain, that Rowan was killed.  That Rowan was not meant to die that day.

We now know, for certain, why Rowan was killed.  Because we, as Rowan’s parents, were never heard.  Because Rowan, our amazing son, was never seen.

We now know, for certain, how Rowan was killed.  Rowan went into cardiac arrest, along with at least 40 other people with William’s Syndrome, as a result of the interaction of anesthesia with his body.  Scientists will continue to work out the minutiae of this interaction, but the minutiae is not necessary to know how these wonderful people were killed.

Twelve months later, we have lost a battle.  Rowan’s death will serve as another example of a wrongful death.  Another example of doctors and hospitals hiding behind the strength of their institution.  Another example of people with disabilities not being seen for who they are.  Another example of parents trying to fight a broken system and losing.  Another example of nobody saying sorry to a five year-old for killing her little brother.

We have lost a battle.  But losing this battle didn’t really matter, because our family had already lost our war.  Each day of that battle, we walked empty handed, without our son in our arms.  Each day, we knew that we had already lost everything that mattered, our most precious right as parents already taken away.

For those that choose to continue, we will keep our how to take action page updated, and welcome the use of our story to conquer the bigger problems for which Rowan’s death serves as a mere example.  We hope that, if you do decide to continue this battle, you will choose to do so in memory of Rowan.

For us, we will continue our peaceful protest, until the day that we can no longer speak.  We will continue to remember Rowan, and share his story.  We will remember loudly the wonderful life that we had with Rowan, and our joyful child that was taken from us too soon.  Please join us, in always remembering, and take every opportunity, along with us, to REMEMBER ROWAN LOUDLY.

Copyright © rowansmile 2014. 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. It is okay to post a link to this page.

It is so profoundly upsetting to see reports like this come out. Even though they validate everything we have fought to have recognized about why Rowan’s death was completely preventable, it will always be too late for Rowan……

The summary statement in the abstract for this report states: “We conclude that Williams syndrome confers a significant anaesthetic risk, which should be recognised and considered by clinicians planning procedures requiring general anaesthesia.”

When reviewing the existing literature on WS and anaesthesia, due to the low quantity and quality of these reports, they also conclude “In the opinion of the authors this makes it impossible to designate any patient with Williams syndrome ‘lowrisk’ for anaesthesia or sedation.”

http://www.ncbi.nlm.nih.gov/pubmed/25233176

Anaesthesia complications 2014

 

Copyright © rowansmile 2014. 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 careless and unnecessary use of general anesthesia for a “routine” outpatient diagnostic procedure.

“You do not have the right to say to a person: I don’t see you the way you are, I want to see you as I would be more comfortable seeing you.” Jane Elliot
I saw Jon Stewart’s piece about Eric Gardner, and I cried. I cried for Eric and his family, but I also cried because Eric’s story felt like another sucker-punch to my stomach.

I don’t think many people realize how connected we feel to these types of stories. Change the police to doctors; change racial discrimination to special needs discrimination, and you have us. Some may think that is too extreme a view, so it is a view that we don’t share with others often. But it is how we feel every day.

I don’t say this to discount racial discrimination or Eric’s personal story, but to point out that discrimination and unfairness in our society and justice system is present at many levels.

http://thedailyshow.cc.com/videos/a9bg2k/the-eric-garner-grand-jury-decision

After learning of the CDPH report, we are worried that Rowan was discriminated against because of his diagnosis, and therefore killed.

We feel this way because:
1. Based on Rowan’s special needs diagnosis (not on Rowan as a person), Dr. Raymond Fripp labeled Rowan as “uncooperative”
2. Because of this label, Dr. Raymond Fripp ordered the use of general anesthesia (which was dangerous for Rowan) for a diagnostic procedure
3. Because of Dr. Raymond Fripp’s label, Dr. Kathleen Kaya was not required to, and did not, provide precautions typical in all general anesthetic procedures
4. Because of #2 and #3, Rowan was killed
5. And finally, because Rowan had a special needs diagnosis, the hospital was able to justify his abysmal care. Because Rowan had special needs, the California Department of Health was able to support the hospital’s justification, and the Medical Board of California was able to ignore it.

This is how we feel.

Copyright © rowansmile 2014. 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.   Please visit the rest of our story: http://www.rowansmile.me