Archives for posts with tag: special needs discrimination

“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.