Archives for category: medical transparency

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

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

IMG_9486

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.

 

 

 

“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

The California Department of Public Health has reached a conclusion of their investigation into Rowan’s death. In their verbal report, they state that the hospital’s policies for anesthesia and the physical environment met all current state standards and they find no regulatory deficiencies. Rowan’s case at the California Department of Public Health is now closed.
In interviews with doctors, the CDPH investigated:

  1. FAILURE TO PLACE AN IV LINE PRIOR TO ANESTHESIA FOR ROWAN. The hospital claims that Rowan was so much at risk from cardiac arrest they didn’t put in an IV line as the “agitation” and crying could kill him. (see “Rowan is uncooperative”)
  2. PLACING ROWAN UNDER GENERAL ANESTHESIA FOR A DIAGNOSTIC EXAM. The hospital claims that Rowan was more than healthy enough, in fact was cleared following a superficial cardiac examination, to follow the general anesthesia guidelines for the general population.

So, Rowan’s physicians and the hospital are saying he was healthy enough for general anesthesia (clearly shown by multiple studies to carry high risk of sudden death for children like Rowan), but not healthy enough to put in the IV line (or any other pre-anesthetic monitoring) that could have saved his life.

As a comparison, it would be negligent to perform general anesthetic induction on an adult with even one significant risk factor for congestive heart disease without placing an IV line prior to induction to maintain hemodynamic balance and allow rapid drug intervention in case of emergencies.

Current recommendations for general anesthesia in children with WS like Rowan highlight the critical importance of maintaining adequate hydration and blood-fluid balance during anesthetic induction. This is almost always done using IV fluids via the placement of an IV line. An IV line also allows for rapid life saving drug administration in the case of sudden cardiac arrest. We know of at least one other child with WS who died under anesthesia, and the hospital claimed that dehydration was the cause. As anesthetic induction is now considered high risk for children with WS, the physical presence of life saving equipment (an example is called ECMO, that takes over the function of the heart) in the room where anesthesia is administered is also highly recommended. None of these recommendations were followed for Rowan, were in fact deliberately ignored, yet all of this is well within acceptable policies and regulations.

The glaring contradiction that Rowan was 1. Too unhealthy and easily agitated for pre-anesthetic monitoring or precautions and 2. Healthy enough for no precautions at anesthetic induction was fully accepted by the CDPH investigating physician as being compliant with acceptable procedures and policies. When we asked the CDPH representative to explain this contradiction, he could not. He could only say, “The CDPH is not responsible for overseeing the doctors’ decisions”.

That the CDPH accepts this clearly bizarre and insulting contradiction and has closed their investigation with no findings against the hospital is insulting, and demonstrates just how systemic the institutionalized suppression of medical malpractice has become. The CDPH justification is that the hospital’s policies on anesthesia (again – it is only institutional policy that CDPH investigates) need to be broad as they have to cover a broad range of patient needs. This justification is an exact representation of the systematic failure and “treating to the average” that lead directly to Rowan’s death.

It is completely unacceptable that Rowan was not seen as an individual with specific medical requirements, despite our loud and repeated concerns. If anyone is in doubt that individuals with special needs are the forgotten minority, this should be a wake-up call. The acceptable policies are boilerplate, sub-standard and no regulatory mechanism exists for the protection of children like Rowan, who are rare, differ from the norm and are uniquely at risk within our medical system.

(Please note the CDPH does not investigate medical errors or malpractice as performed by individual doctors etc.. That is investigated by the California Medical Board, who we have petitioned. To this date, nearly one year after Rowan’s death, we have received no response form the California Medical Board).

UPDATE:   The above is based on a verbal conversation.  When we received a written  letter a month later, it stated ““a common practice in pediatrics to not insert an IV line prior to anesthesia induction

After reading today’s news with great sadness and confusion, I was somewhat relieved to see this article talking about how official reports of medical errors are woefully inadequate:

http://commonhealth.wbur.org/2014/12/medical-errors-massachusetts-study

This statement in the article was the one I found most disturbing:

“Researchers interviewed people who had been hospitalized in 16 institutions about their own experience and checked it against medical records. Twenty-three percent said they’d had at least one “adverse event,” although only about half of those were documented in their record.”

Though much of the article was more disturbing than uplifting, I am glad to see the positive action and great efforts that are taking place in Massachusetts.  Though too late for our family, we hope to see the same efforts taking place in California someday.

 

PS – For those that may wonder about this part of the article: “.. acknowledges that nondisclosure hasn’t worked — that involving only health care insiders and state bureaucrats is not getting the job done. “We do need to get beyond the inside game,” she says. “The doors need to be thrown open and other voices need to be heard — particularly the consumer voice.”  But that doesn’t mean, she adds, that names and details of particular errors need to be made public.”

Please know that we completely agree, and we do not feel we make this statement in a hypocritical manner.  Please know that the original version of this website contained no names, and public disclosure of Rowan’s doctors and hospital was only done after many months of attempts for transparency.  This disclosure was only made after we felt that our option to keep their identities private was exhausted.  We continue to feel that the only way for the hospital and doctors to address this act of negligence is to expose their names, and we hope that a time will come when we feel safe removing their names from this website.

 

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.

 

 

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

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

I knew nothing about this issue until Rowan was killed during a “routine” outpatient diagnostic procedure, after doctors openly ignored our repeated pleas for his safety.

In our case, my husband and I had the time, talent, and access to pro-bono medical researchers to present our case on the internet: a luxury that most bereaved parents don’t have..

Even then, after ten months of presenting a solid case of gross negligence, we are still struggling to have the hospital admit fault.  We have presented the expert opinions of both doctors and medical researchers, a 5,000 signature petition, and have worked tirelessly on seeking justice at a time when we are suffering in immense grief for our son, raising a small daughter, and trying to fulfill all of life’s other requirements.  To this date, we have not been successful at obtaining an investigation by the Medical Board of California, the organization who ultimately has the power to hold our doctors’ accountable.  (Though the Dept of Health has recently opened an investigation, their powers are very limited)

I am against making our society more litigious, but parents have no where else to turn. These cases are ignored by those who oversee hospitals and are immune from our criminal justice system. Parents need to go somewhere for help and justice, not be left to fight institutions on their own, and sadly, the civil legal system is usually the only resource available to them.

Now that I am more informed, I realize that the current cap in California does not even cover the cost to the lawyers to try a case, and because of this, cases for children are often simply not tried.  I truly wish there was another alternative to find justice, but there doesn’t seem to be.

I don’t care how voters decide on this issue tomorrow, but I do hope that people take the time to become educated.  The issue is much more complicated than this simple proposition.  My hope is that some kind of change is made to allow families to seek justice for their children.

No one in our society should be able to act without accountability.  Especially those who are responsible for our children’s lives.

http://ballotpedia.org/California_Proposition_46,_Medical_Malpractice_Lawsuits_Cap_and_Drug_Testing_of_Doctors_(2014)

My daughter asks, “Mommy, did the doctors say they are sorry?” How does a parent then say, “No, because they don’t have to.”

Dear Mr. Sewell,

I am writing this letter in support of Dan and Tracey XXX’s request for a full investigation in to the negligent actions of three doctors involved in the care, and ultimately the death, of their three-year old son, Rowan. Those doctors are: Dr. Raymond Fripp, Cardiologist, Rady Children’s Hospital; Dr. Kathleen Kaya, Pediatric Cardiac Anesthesiologist, Rady Children’s Hospital; Dr. John Moore, Chief of Cardiology, Rady Children’s Hospital. As you may now know, Rowan was at Rady to have an elective CT angiogram to evaluate possible coronary artery stenosis. Rowan became hypotensive and bradycardiac while undergoing induction of anesthesia and did not recover from cardiac arrest. Rowan’s doctors and the hospital claim that Rowan died from a “pre-existing condition”, however, the facts surrounding this case do not support their claim. We ask that you investigate those facts, and the negligent actions taken by the doctors involved. Specifically:

Dr. Fripp did not provide accurate information to Rowan’s parents for informed consent, and deliberately misrepresented the risks associated with general anesthesia for children with Williams Syndrome. Additionally, Dr. Fripp did not offer Rowan’s parents, or inform them of, alternatives to anesthesia that carry little to no risk, such as play therapy— despite these alternatives being the standard of care for at risk children at neighboring Children’s Hospitals. 1

Dr. Kaya also misrepresented her knowledge of the anesthetic risk for children with Williams Syndrome and was negligent in her administration of anesthesia to Rowan on the day he died. Not only were the basic standards for all children not followed (e.g. no IV line placed prior to induction, inadequate cardiac monitoring during induction), but the specified recommended standards for children with Williams Syndrome were also ignored by Dr. Kaya.2,3 Their specific complaints are: the use of non-recommended anesthetic agent, the absence of ECMO in the CT room, no IV re-hydration to maintain hemodynamic balance, and inadequate monitoring.

Dr. John Moore deliberately misrepresented the primary reason for the CT scan in the medical record after Rowan’s death. Leading up to the procedure, Rowan’s parents were told a CT was necessary to assess the coronary arteries for signs of stenosis, which they now know if present, significantly increases the risk of sudden death under anesthesia.4 After Rowan’s death, the reason for the scan was changed to assessing his pre-existing SVAS and PAS, with no mention of coronorary artery stenosis. SVAS and PAS can easily be assessed using ultrasound- with no need for sedation or general anesthesia.

Dr. Fripp, Dr. Kaya and Dr. Moore, as well as the other medical professionals at Radys, treated Rowan as a low-risk patient, when published medical knowledge suggested he be treated as the highest risk possible. Unfortunately, these doctors have not learned from their mistakes and are still attempting to put children with Williams Syndrome under general anesthesia unnecessarily.5

A number of negligent actions and decisions made in Rowan’s case by his doctors resulted in his death, but for me, a parent of two small children, the most heinous offense was committed when Dr. Kaya called Rowan’s parents the night of his death, a call supported by Rady, and suggested that Rowan died due to the stress from crying while being put under. The utter hubris in this statement is sickening and concerning, and one of the reasons why I started an online-petition to ask the Department of Health to open an investigation into Rowan’s death, which is currently underway. We have collected over 4,800 signatures from individuals who are demanding the doctors be held responsible, and that action be taken to prevent more preventable deaths from happening due to negligence and mis-information. I have included this petition, as well as comments made by signers.

Myself, and over 4,800 people believe an investigation in to Rowan’s death is not only the right thing to do, but imperative for the safety of many other vulnerable children in your State. We hope you agree.

Sincerely,

XXXXX
1. A case report on anesthesia-related deaths of patients with WS and SVAS highlights “the potential risks of providing sedation or general anesthesia for patients with WS, SVAS, and coronary artery disease.” In: Horowitz PE, Akhtar S, Wulff JA, Al Fadley F, Al Halees Z. Coronary artery disease and anesthesia-related death in children with Williams syndrome. J Cardiothorac Vasc Anesth 2002;16:739-41

2. Stamm et al. suggest that every patient with SVAS should be considered high risk for myocardial ischemia. The authors point out that procedures that produce a sudden drop in coronary perfusion pressure, such as anesthesia, have led to acute myocardial ischemia and procedure-related sudden death. In: Stamm C, Friehs I, Ho SY, Moran AM, Jonas RA, del Nido PJ. Congenital supravalvar aortic stenosis: a simple lesion? Eur J Cardiothorac Surg 2001;19:195–202

3. A more recent study by Ergul et al. concluded that the incidence of coronary artery defects and myocardial ischemia in children with WS is much higher than previously thought. They went on to recommend more detailed non-invasive and awake testing before considering anesthesia, and the use of mild sedation rather than anesthesia if needed. “Many deaths have occurred during anesthesia/sedation …, suggesting that decreased cardiac output from anesthetic agents in concert with coronary artery abnormalities alter myocardial perfusion.” In: Ergul Y, Nisli K, Kayserili H, Karaman B, Basaran S, Dursun M, Yilmaz E, Ergul N, Unal SN, Dindar A. Evaluation of coronary artery abnormalities in Williams syndrome patients using myocardial perfusion scintigraphy and CT angiography. Cardiology J 2012; 19(3):301-308

4. In their review of the pathology of SVAS and the literature regarding sudden death associated with sedation and anesthesia, Burch et al. conclude that “with congenital SVAS, myocardial ischemia has been implicated in a majority of cases of sudden death occurring in conjunction with anesthesia or sedation. Features common to the reported cases are sudden, rapid hemodynamic deterioration associated with hypotension and bradycardia and lack of response to aggresive resuscitative measures”. They go on to further state that coronary arterial flow impairment can occur even in the absence of significant SVAS, and therefore caution should be taken regardless of the varying degrees of SVAS. In: Burch TM, McGowan FX, Kussman BD, Powell AJ, DiNardo JA. Congenital supravalvular aorticstenosis and sudden death associated with anesthesia: what’s the mystery? Anesth Analg. 2008 Dec; 107(6):1848-54

5. Comment from our online petition:
“I don’t even know where to begin… Reading this story is heartbreaking and I can’t imagine how this family feels. This story was brought to my attention a few months ago.. This hits very close to home. You see, we too live in San Diego and go to Rady’s hospital. My son actually goes to the same Cardiologist as Rowan did. Since my son was born we have had 3 Echo’s, All at Rady’s and all under sedation medicine. Most recently my sons heart went from Mild to Moderate and the Cardiologist said that giving my son sedation medicine has become more risky b/c once he eats the medicine its in his system and they have no control over it. Plus, when they do an echo it is with a nurse & Technician.. My Cardiologist suggested that our only next step would be to do an Echo under general anesthesia. Even though its more risky he would be in the hands of professionals and doctors and anesthesiologists in case something happened they would have “more control” I was very concerned obviously being that I have read so much on the WS Support page about the risks with our kids and anesthesia. I brought these concerns up to my doctor multiple times and I even brought up little Rowan b/c I had heard about him through one of our therapists whom we actually shared. My Cardiologist said it was the next step. At some point I just had to believe we were doing the right thing. But I was really scared and preparing myself for the worst. I happened to get a 2nd opinion 2 days ago at CHLA.. I was EXTREMELY surprised and shocked to have received a ECHO under with NO DRUGS AT ALL! I’m sorry but I have never been given the option. I had NO IDEA this was an option. We have sedated my baby 3 times for an ECHO and were about to put his life at risk under general Anesthesia because “this was our only option”. Are you kidding me? You can do an echo with no risk to my child’s life? You can imagine how i felt. This hospital has obviously not learned their lesson and although they did make us 1st case of the day and said he was “High Risk” They have put his life at risk unnecessarily 3 times. and were about to for a 4th. I’m sorry for the long post but after reading this I am heart broken for this family and because they shared their story I was much more aware of the risks and they helped possibly save my child. I will sign this petition and get every person I can to sign it too..”

*Note- it has since been determined that this child’s cardiologist is not the same cardiologist as Rowan’s (Dr. Fripp), but rather Dr. Moore, the head of cardiology at Rady

%d bloggers like this: