Archives for category: sudden death

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.

“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

“Rowan is uncooperative”

"Uncooperative?" Rowan receiving an exam October 2013

“Uncooperative?” Rowan receiving an exam October 2013

These are the words that are being used to justify the killing of our amazing son Rowan.
These are the words that the hospital is using to justify not using (not even attempting to use)  an IV catheter, or any another precautions or monitoring before the careless use of general anesthesia.
These are the words that the hospital is using to justify the unnecessary use of general anesthesia for a diagnostic procedure.
Rowan did nothing to deserve this description, other than that he looked different than you or I. Nothing other than being born with Williams Syndrome.

Rowan was happy, playing, and cooperative before anesthetic induction. He was cooperative and without tears as the anesthesia began to flow into his body.

Rowan regularly visited doctors throughout his life, and cried occasionally, just like every other kid.  He cried: 1. Once when he had to fast for 15 hours (12:00 am to 3:30pm) and cried because he was (very) hungry, 2. Once because he had an ophthalmology appointment that lasted for five hours, 3. When he was put on an infant scale (he was happy once he got big enough for a big kid scale), and 4. ONCE (out of five cardiology appts) because he was initially scared of Dr. Fripp. He did not cry for the pediatrician, Rady’s own ophthalmologist, Rady’s own geneticist, or Rady’s own physical therapist, though he did not prefer the dentist.  Oh, and he cried at the grocery store when he didn’t get the food he wanted.

Rowan sat still and happily for blood draws without a tear, received ultrasounds without sedation, and was fascinated by whirring machines. Rowan flirted with nurses, and relaxed in my lap many times when his heart was listened to, he had his blood pressure read, or he received an EKG. Rowan consistently received positive notes from his therapists and teachers about his cooperative nature and willingness to participate.

Rowan was a very cooperative child, who was given a label because he had special needs. And that label killed him.

We are beyond infuriated, but we will not meet this injustice with anger.  Instead, we will show the world the real Rowan.

Please join us, in progress:  Rowan, one year ago today:  http://rowansmile.me/one-year-ago-today/

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.

As we wander through the world, amongst the people whom I now refer to as the “uncomfortable people”, I often wonder what makes them so uncomfortable.  Uncomfortable with grief, I get that.  A year ago, that would have been me.    Don’t know what to say, don’t know what to do, maybe it’s best to not say anything or pretend the grief is not there.

But there’s something more.  Our grief, together with our story, seems to bring about a different kind of “uncomfortable”.  The kind that makes people feel the need to be different than us.  The kind that makes people feel the need make their child different from Rowan.

Rowan had differences.  He had a bigger smile, he had a louder “Hi!”.  He spoke a different language (sign-language) while other kids learned to talk.

And Rowan was the same.  He encouraged a friend to crawl, he loved to swing, he learned to kick his feet and blow bubbles in the bath with his big sister.  He loved his family and friends, and the world around him, and made new discoveries in that world each and every day..

To those differences and similarities, people say “Of course, of course”.  We are in the 21st century, we have come a long way from institutionalizing those who have external differences.  Of course we understand.

But.. here’s where this post in going to get uncomfortable, and I forgive you if you choose to stop here.   Well, sort of.

Because what I need to tell you is that Rowan was the same.  Rowan was the same as your child.

His entire life, a common cold was the only medical ailment that bothered him.  No visits to the ER, no hospital stays, no medications.. his entire life beyond the first four days.

Yup, he had diagnostics.  Just like your child.

And he saw lots of doctors, because he was different, and doctors were interested.  In his entire life, how many of those diagnostics revealed an ailment that needed medical treatment?  How many were more than a quick look to say “Everything looks good”?  Just one.  The one that killed him.

Rowan was the same.  That’s right.  The same as your child.  The same as any two year old visiting the hospital for a routine test.  Has your child ever received an x-ray, an MRI, an ultrasound, a lab test?  Because something about your child was slightly different than the average?  Something that made a doctor say, “we just want to take a closer look.”  If yes, than your child is exactly the same.  Rowan walked into the hospital, exactly like your child, and was supposed to walk back out an hour or so later,  just like your child.

“Wasn’t Rowan sick?”  Good question.  No one will ever know.  We know the doctors said he was “healthy” up until moments before he was killed by anesthesia.  But we will never know how “sick” he was, or if he would have lived a full and happy life with a heart that was “different” just like many before him. We will never know if he would have needed a risky surgery, or if that surgery would have been a great success.  We will never know because nobody looked at his heart before anesthesia.  Nobody looked before they gave him the poison that killed him.

So I guess that I’m trying to say that I’m okay that people are uncomfortable.  I understand why people need to feel like what happened to us cannot happen to them.  I understand why they need to hold onto the “knowledge” that their two year old is safe.  Because my empty arms are a scary site, and I understand why people  look away.

I don’t write with hopes of scaring people, or vilifying the medical practices that have saved many lives.  I write with a hope that people will look at my empty arms, and with a plea that they will face the scary reality that those arms hold.  Rowan died because too many people looked away, please don’t look away now.  For each time you do, Rowan life loses just a little bit of its importance in this world.  Is that what you would want for your child?

 

 

 

Copyright 2014@www.rowansmile.me

Please share our story with an act of kindness:  http://www.rowansmile.me

 

 

The other day, we were riding in a taxi, on the way to the airport to grieve with family.  On the way, we were stuck at a red light.  You know the one, where the light just keeps skipping your turn for a green light for some reason unknown.  Then, our chatty driver began a new conversation.  It went something like this:

Driver: “I wish I was in my own car not a taxi.  I would run this red light.”

Me: “Why the difference?”

Driver: “Because I would get a huge fine for a taxi.  Much bigger than in a regular car.”

Me: “Wow. I didn’t know that.”

Driver: “Of course.  When I drive a taxi, I have the lives of other people in my backseat.  If I am not responsible, then they should throw the book at me.”

Well said, taxi driver.

Please join us in asking Chief Medical Examiner Wagner to re-open an investigation into Rowan’s death.  Your letters can be sent to:

Chief Medical Examiner Wagner

5570 Overland Ave.
Suite 101
San Diego, CA 92123-1206

or call: (858) 694-2895

 

Police Chief Shelley Zimmerman

Headquarters
1401 Broadway, San Diego, CA 92101
Phone: (619) 531-2000

 

June 27, 2014

Dear Chief Medical Examiner Wagner,

Our two-year old son Rowan was killed during an outpatient diagnostic procedure whilst under the care of physicians at Rady Children’s Hospital division of pediatric cardiology. Your office’s representative was quick to determine that his death did not warrant further investigation, a decision that I firmly believe was incredibly premature and incorrect.

Our own subsequent research has led us to the objective conclusion that Rowan was killed, not due to a “Pre-existing condition” as stated in his post mortem medical records and on his death certificate, but due to gross negligence on the part of his anesthesiologist (Dr Kathleen Kaya) and primary cardiologist (Dr Raymond Fripp).

The information about the details of Rowan’s negligent care has been actively suppressed by others at Rady’s, including the Chief of Cardiology Dr John Moore and the head of quality assurance Dr Irvin Kaufman. This includes, but is not limited to: misrepresenting the primary reason for performing the procedure that led to Rowan’s death in the post mortem medical records (namely identification of coronary artery stenosis by CT scan) and withholding of documents which reveal this negligence.

Each of Rowan’s physicians repeatedly failed to provide the necessary and easily available information on anesthetic risk for children like Rowan, making it impossible for our family to provide informed consent for any anesthetic procedure. Rowan’s anesthesiologist, Dr Kathleen Kaya also agreed to a written statement that she was “well versed in the anesthetic risk associated with William’s Syndrome” before we allowed her to have Rowan under her care. Consequently, general anesthesia was administered to Rowan under grossly negligent and substandard conditions that were far below the reported standard of care for children with William’s Syndrome. It is this fact that led directly to Rowan’s death, not the presence of a pre-existing condition.

Despite written assurances from Dr Donald Kearns and Dr Irvin Kaufman that an independent external review of Rowan’s death would be performed, no such review has ever been initiated, and we have received no further communication from anyone at Rady Children’s hospital.

I ask that you re-open your investigation into the criminal medical negligence that led to Rowan’s death at the earliest opportunity. It is now a matter of public record that there is a culture of silence and denial of responsibility within the medical community in San Diego. Do not let this continue, and let other families suffer the loss of a child and the pain of being denied the details of a loved one’s death.

I hope to hear from you regarding your department’s investigation into my son’s death immediately upon receipt of this letter.

I hope that you take a moment to read our story.
http://www.rowansmile.me

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.

It has been six months since Rowan was killed. This week, Rowan should be attending his first day of preschool.

The other day at dinner, Rowan’s sister started a familiar conversation:

Mommy, why did Rowan die?

“The doctors gave Rowan a medicine called anesthesia. Anesthesia usually makes people fall asleep, and then they wake up. But Rowan’s heart was different than ours, and he couldn’t have anesthesia. So the anesthesia made his heart stop working and he died.”
“Why couldn’t Rowan have anesthesia?”
“Because everyone is different. Just like your friend Molly can’t eat nuts. So we have to be careful because if we gave her nuts she might die. Rowan’s heart was built differently than ours, so he couldn’t have anesthesia. We don’t know exactly why. But we do know the doctors weren’t careful and gave it to him anyway, and he died.
You can eat nuts and you can have anesthesia, but everyone is different and there are certain things each person can’t have.”
“Why did they give him (anesthesia)?”
“I don’t know. Because they didn’t pay attention. They should have listened and should have known that he couldn’t have anesthesia without being very careful, but they didn’t.”
“If Rowan’s doctor didn’t make a mistake, would he have died?”
“No.”
This conversation could take place at any table. A child does not have to have special needs to be a victim of a doctor’s hubris, it can happen to a typical child as well. Your child.

In the last six months..

  • We have worked to hold onto memories of Rowan, saving every last drawing, every last item, every last picture of Rowan’s. We talk about him, and share our memories. We try to hold onto the dream that was once our reality.
  • We have tried to find peace in knowing that our story has spread around the world, and made a difference for the many people and families who have read it.
  • We have worked to plant Rowan’s tree, so that our daughter will having something living to remember him. We have made him a part of our daily life, in his absence.
  • We have learned, with much help, exactly why and how Rowan was killed, and who played each role in his death.  With this knowledge, we now begin to heal.
  • We have tried to carry on Rowan’s lesson of embracing goodness and kindness, and tried to see in the world around us as he did.
  • We have become friends with strangers, and strengthened friendships beyond what we ever imagined.
  • We have received a tremendous amount of help from those we hardly know, who have given freely without expectation.
  • We have become a part of a community of Williams Syndrome parents who have shared their stories, and exposed their hearts.  For these things, we are forever grateful.

But..

  • We have lost friends, and had others turn away to shield themselves from our grief.
  • We have tried to talk to Rowan’s doctors, his hospital, and the institutes that oversee them. We have received no reply. We have tried to get the information that exists about our own son. We have been turned away. We have tried to obtain an external review of Rowan’s case, which was promised to us.  We have been ignored.  Instead, we receive bills for the anesthesia that killed him. Instead, we hear about how Rowan’s doctors remain lauded with praise from their peers, and Rady Children’s Hospital remains one of the highest ranked pediatric heart centers in the nation.
  • We have tried to talk to the executive director of the Williams Syndrome Association. She, too, has met any criticism with silence. Instead, Terry Monkaba states widely that “The WSA wants to provide as much information as possible to all WS families.” At the same time, we receive stories from the very families who reached out to her to change the anesthetic risk information spread by the WSA, and were ignored. She also gives credit to the Williams Syndrome Association’s medical team and “esteemed cardiac anesthesiologist with a great deal of WS experience” (RT Collins) for the WSA website’s updated information, credit to the very doctors who withheld necessary information from our community, and widely spread false information.  It was very difficult for us to realize that this group, which is very helpful and supportive of the Williams Syndrome community in many ways, also contributed to something terrible.
  • We have heard from many families. Families who have tried to talk to their doctors about the anesthetic risk associated with Williams Syndrome, and been ignored. Families who have suffered tragic experiences and great losses, and were ignored by the Williams Syndrome Association when they tried to make a change. Families who have gone to doctors with research and concerns, and had doctors proceed without precautions. Families who want to be informed advocates for their children, just like we did.
  • And we have cried, and continue to do so, many times each day.

We continue to hope that our website spreads awareness among families and doctors. But in the end we are left empty-handed and empty-heartened, with the knowledge that Rowan’s death should not have been necessary for anesthetic risk to be taken seriously.
We hope to continue to remember Rowan through our lives. We hope to begin healing, and begin concentrating on his life. Someday, when we find the strength, we hope to share his joys by building a foundation.  Maybe it will be to share music and art with children in need.  Time will tell.
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.

It is widely known in current research that general anesthesia should not be given to a person with Williams Syndrome without great care. Yet his anesthesiologist, Dr. Kaya agreed to a signed document that she “was well-versed in the anesthetic risk associated with Williams Syndrome”. She then administered anesthesia to Rowan without taking any of the known precautions and did not administer Williams Syndrome appropriate life-saving procedures after Rowan’s cardiac arrest. Dr. Kaya is not considered a criminal. Instead, she is protected under the United States healthcare system. His cardiologist, Dr. Raymond Fripp, who insisted on using anesthesia to diagnose the very thing (coronary artery stenosis) that put Rowan at high-risk, is still practicing in high regard today. The Chief of Cardiology, Dr. John Moore, who falsified documents regarding the reason for Rowan’s death and the reason for his anesthetic procedure, is still praised among his peers. How is this possible?
We believe it is possible because the very people that are meant to oversee these doctors’ practices turned a blind eye to the crime that was committed (Donald Kearns, MD MMM, Rady Children’s Hospital; Christopher J Durovich, James E Schmerling, Children’s Hospital Association). The very establishments these doctors work for feed their hubris, while showing them that they will be immune to their own mistakes and ignorance.
Rowan had a high-risk of sudden death if given general anesthesia. Otherwise, he was a happy and energetic toddler whose heart was built differently than yours or mine. If I was notified of the risk of a child’s peanut allergy solely by her parents, and I dismissed their concerns and intentionally fed that child a bowl of peanuts, I would face criminal charges. Yet doctors of patients with Williams Syndrome routinely give anesthesia to these children without precaution, despite protests and concerns from their parents. And when those doctors kill a child, they are protected? We ask, how and why is this possible?
We have faith that you, our community and our society, will continue to right this wrong for those who are still lucky enough to have hope.

 

 

 

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.

Today, US news rated Rady Children’s Hospital one of the 50 top-ranked pediatric heart centers in the country.

http://health.usnews.com/best-hospitals/pediatric-rankings/cardiology-and-heart-surgery?page=3