Archives for category: William’s Syndrome

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

“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.

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.

Our greatest wish was to be a part of a community where we felt safe.  Our intention is to help fill the gap in the community where Rowan was left behind.

We are thankful that the Williams Syndrome Association website was updated today (May 21, 2014).  Though too late to avoid our family’s loss, we hope that another family will benefit from this information.

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