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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.

Rowan being a very cooperative 2 year old, just a few weeks before he was killed

Rowan being a very cooperative 2 year old, just a few weeks before he was killed

Special Needs Discrimination in Healthcare.  It’s real, just like it is real throughout our society.

I was naive.  I had seen it in my everyday life with Rowan..  in the occasional act of unnecessary compassion from a friend, in a therapist who thought his diagnosis defined his capabilities, in the surprised look of an acquaintance when we said that he would be attending her child’s preschool, in the occasional look of pity from a stranger.  But I never expected to see it from a doctor.  Rowan hadn’t ever been sick, so I didn’t have the chance to learn what other parents already knew, and I was blindsided.

We believe that special needs discrimination is the ultimate reason why our son was killed.

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

We believe this 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.

And we ask, why aren’t we talking about it?

If I am truthful with myself, I realize that I have even been guilty of special needs profiling at some level.  Have you?  I was lucky enough to have Rowan, who gave me the opportunity to see the world from a different and much better perspective. I hope that you have taken the opportunity to see the world from his perspective, too.

For current research documenting special needs discrimination in healthcare, visit:  Special Needs Discrimination Healthcare – References

Want to make a difference?  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 careless and unnecessary use of general anesthesia for a “routine” outpatient procedure.

It has been eight months since our lives were shattered by the loss of Rowan.

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

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

 

Eight months later..

  • We are preparing to remember Rowan on his third birthday, as we celebrate his sister’s first day of Kindergarten.
  • We continue to be in awe of the amazing support from both children and adults, who have gone above and beyond the limits of true friendship. Recently, one of Rowan’s 5 year old friends learned about time travel and said to his mom “I want to go back and get Rowan to give him back to his big sister.”  Compassion and empathy seem to come so easy when you are five.
  • We continue to receive random and generous acts of kindness from strangers. Just yesterday, a man named Steve offered a wonderful gift of time and talent to remember Rowan, having never known him. Thank you, Steve. And the list goes on, giving us hope as we go out into the world each day.
  • We have heard about the Random Acts of Kindness that people have performed in Rowan’s memory, and we have enjoyed hearing the stories. Sometimes heartfelt, sometimes funny, always appreciated.
  • We have heard from the Williams Syndrome community that an active discussion regarding anesthesia took place at this year’s convention and that the Williams Syndrome Association website continues to be corrected. Though we continue to be disheartened that we were met with silence and resistance by the Williams Syndrome Association, we are hopeful that necessary changes are being made.
  • We have met strangers, now friends, who understand that eight months is just a moment in the lifetime during which we will carry our sadness.
  • We spend each day thankful for memories that pop up at the most unexpected times, and thankful for the people who say “Remember when..” We have over two years of the most wonderful memories, that we will cherish always and hold onto at every opportunity.
  • We find, each day, small moments that make us think of Rowan and make us smile.
  • And we frolic and play with our daughter, in appreciation of each moment that we have together.

But.

  • We spend each night waking from visions that we cannot erase. The color of our son’s eyes, as they were without his soul shining out from them. The look on our daughter’s face, when the spark of innocence left her, driving home in the car as the reality of what she just saw began to sink in. The sight of our son’s blood, as it washed off my skin and down into the shower drain. The details, too horrific to put into words, of our witness to each stage of our son’s death. For Rowan’s death was not the peaceful one that some hope to imagine.
  • We try to comfort our daughter as she tries to save her brother in her sleep, and fears for our loss each day. We try to remain compassionate as she lets out her own anger and grief, and supportive as she tries to remember.
  • We remain disheartened at our inability to have Rowan’s death be taken seriously. After five months of silence, we received a letter from Rady Children’s Hospital on August 11, though the hospital still has not addressed our concerns. The documents we have repeatedly requested remain hidden. Though we would welcome the opportunity for a documented conversation with a knowledgeable source, their continued offer of a “personal” conversation with their health affairs officer, the very person who previously claimed he could not answer our questions because he had “no personal knowledge of Rowan’s case”, is something we find both disturbing and offensive. Eight months later, after we have already performed our own investigation with the generous help and candid opinions of numerous doctors, we have no need for a personal conversation with someone who admittedly does not have thorough knowledge of Rowan’s care.
  • We have received no response from the  Medical Examiner, or the Police Department, or any organization outside of the hospital that killed Rowan in regards to an unbiased investigation into his death.  Though we live with the reality that Rowan’s death may ultimately be ignored, knowing we did the best we could is important to us.  Our responsibility as parents does not stop  just because we can no longer hold our son in our arms.
  • We remain saddened and angry that the doctors who contributed to Rowan’s untimely death remain untouched, and responsible for the care of other vulnerable children..
  • We see no protests in the street; no groups taking action.  Instead we spend each day trying to find the answer to the question.. “How are you today?”  Making us wonder each time, “Did our son’s life matter?”
  • We manage to get out of bed each day, as we each deal with our own guilt, search for our own path, and try to find our way without Rowan
  • And we cry, everyday.

 

Read our story: http://www.rowansmile.me

How to remember Rowan with kindness:  http://rowansmile.me/act-of-kindness-for-rowan/

How to take action:  http://rowansmile.me/how-to-take-action/

 

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 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

 

 

This is the bill that arrived in today’s mail.

You’ll see the note at the bottom says: “failure to comply with this request may result in your account being placed with our collection agency immediately”.

Each time I receive these letters in the mail,  I feel like I am being delivered the smoking gun that murdered my child, and asked, “Oh, and can you pay for this?”

The bill for the anesthesia that killed Rowan.  Five months later, instead of admitting that Rowan was killed, the hospital chooses to keep adding insult to our tragic loss..

The bill for the anesthesia that killed Rowan. Five months later, instead of admitting that Rowan was killed, the hospital chooses to keep adding insult to our tragic loss..

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.