Archives for category: toddler death

Compare/contrast these two situations:

1.  A typical child goes in for a routine examination.  The child’s mother tells the physician, “My child cannot have penicillin.”  In fact, the mother has been mentioning that for over a year.  The physician says, “I know what I’m doing” and gives that child a shot of penicillin anyway.  The child dies, and the mother shouts “You killed him!”

2. A non-typical child goes in for a routine examination.  The child’s mother tells the physician, “My child cannot have anesthesia.”  In fact, the mother has been shouting that for over a year.  The physician says, “I know what I’m doing” and gives that child anesthesia anyway.  The child dies, and the mother shouts “You killed him!”

What is the difference between these two stories? (Yes, I already know that penicillin would likely kill someone by anaphyllaxis and anesthesia would likely kill someone by cardiac arrest)

What is the difference in society’s reaction?

The comments section is open..

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Camping with Rowan

This weekend, we went camping in the rain. In the morning, as the sun came out, a sister and brother wandered into our campsite and peered into our tent to say hello to our daughter.
We emerged for introductions and to play, and as the little brother followed Dan, the two girls went about the typical “I have that, too” introduction that six year olds do. The morning was going along smoothly, and as we prepared breakfast, C was happy to have two new friends. Eventually, her new friend (whom I’ll fictionally refer to as “S”), picked up my phone off the table, pushed the button, and saw the photo of C and Rowan.
S: “C has a little brother, too. Where is he?”
Me: “He died”
S: “Why?”
C: “The doctors gave him anesthesia and they weren’t supposed to”
S: “That is sad”
C: “Yeah”
S: “I share a room with my little brother”
C: “Me and Rowan shared a room, too”
S: “Let’s go play in the meadow”
C: “Okay”
They wander off, exploring, playing on logs, saving the Earth picking up trash, and taking turns pulling S’s little brother around with a bungee cord (don’t ask me why, it seemed like a fantastic idea to all three of them)
Next, they all wander to the campsite next door, and run into S’s mom.
S: “Mom, C has a little brother that died”
C: “The doctors gave him anesthesia, and they killed him”

As I overhear, I hold my breath. The world seeming to slow down around me, as so many previous scenarios swim through my mind. Will the mom say something to try to dampen or change reality? Will she pull away C’s new friend, leaving C to need comfort at another disappointment? (Yes, these things are the norm, rather than the exception)

“That’s very sad” says S’s mom. And both girls move on to the next item on their list.
A little while later, we parents meet. Parent introductions that are always more difficult than kids’. Eventually, our story gets mentioned. I slip them our card that says boldly ‘Special Needs Discrimination in Healthcare’, and I hold my breath again. She reads it, puts it in her pocket, and says “I’ll read it”. “How long ago?” she asks, followed by “Wow, that’s just yesterday”. “Yes”, I answer, “it all depends on your perspective, but it feels like yesterday to me.” And a few awkward moments of us all staring silently into the meadow.

A little more small talk, and then the conversation becomes easier. We chat about the storm, and about how we each bought our cars for camping with two kids. We chat about work, and school, and the trips we took with Rowan. They tell us how their toddler is always hungry, and C talks about how Rowan always tried to eat everyone’s food.
And it was easy.

As the day passes, each family packs up our belongings, as the kids imagine they are gazing at the stars.
And, instead of witnessing their relief at the exit, I’m handed a paper with an email address, “Let’s go camping again”.

Friends, afraid, become strangers.

And strangers, not afraid, become friends.

We didn’t have a choice.  We didn’t.  We simply didn’t.

Yes, in hindsight, we could have taken Rowan to a different town, or Australia.. where proper precautions would have been taken.  If we had known what we know now, we certainly would have put our entire family on that plane.

But I read stories like this one.  I read lots of them.  And I realize that this story isn’t about whether you agree with Cassandra, or her mother, or the doctors.

It’s a story about who is in charge.  And it’s not the parents:

http://www.economist.com/blogs/democracyinamerica/2015/01/medical-consent?fsrc=scn/tw/te/bl/ed/cassandrascatch22

And it wasn’t me.

I pleaded, I begged.  I made phone call after phone call.  Talked to doctor after doctor.

Do it without anesthesia.. “No”

Make him an in-patient.. “No”

Do more tests beforehand.. “No”

Find a better way.. “No”

Listen to me..NO!

“We are one of the best hospitals in the world.  We know what we are doing.”

“There is no other option.”

When they didn’t listen.. they didn’t just take away my son.  They took away my voice.  They took away me.

When people turn away, or don’t take action.. They don’t just turn away from my son.  They don’t just turn away from my loss.  They turn away from me.

And I matter.

“I’m not asking much… just your voice!” the sea witch told Ariel.  Is that really what it takes to live in the human world?

There is absolutely no relief when a bereaved parent can say I told you so.  It only causes more pain.

An article on alternative, and better, methods for heart imaging:

http://www.utsandiego.com/news/2015/mar/14/ct-scan-stress-test/

Outraged?  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 as a direct result of the careless 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.

Somehow, in the fog of immense grief, we allowed this message to be overlooked. The hospital, the people around us, ourselves (in doubt of our own selves and each other), everyone allowed this message to be diluted.. and to be lost.
And it may be the most important message of all:

I said NO, over and over again,

I. SAID. NO.

I said NO sternly as your intern watched wide eyed, surprised at a patient objecting,

I. SAID. NO.

I said NO quietly as I pleaded with you on the phone,

I. SAID. NO.

I said NO angrily as I walked away from your colleagues,

I. SAID. NO.

I said NO nicely as he played happily with your stethoscope,

I.  SAID. NO.

I said NO in my worried requests for a different option,

I. SAID. NO.

I said NO in my insistence on your credentials and your assurance that he would be safe,

I. SAID. NO.

I said NO for an entire year.

I. SAID. NO.

I said NO in a just plain, loud, clear, and simple “NO”, and it was not misunderstood.

I. SAID. NO.

I. SAID. NO.

I. SAID. NO.

I. SAID. NO.

I. SAID. NO.

I am Rowan’s mother.  MY NO MATTERED S

and I am Rowan’s father.  MY NO MATTEREDS

 

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.

Peace as the world commonly understands it comes when the summer sky is clear and the sun shines in scintillating beauty, When the pocketbook is full, When the mind and body are free of ache and pain.. but.. true peace… is a calmness of soul amid terrors of trouble, inner tranquility amid the howl and rage of the outer storm..

Martin Luther King Jr.

We will never be able to lose the vision of our son being gassed to death before our eyes, without even the simplest of care or precautions afforded to other children.. because of who he was wrongly perceived to be.  But we will work to find the peace that lies within that terror.

We will always be thankful for, and will always remember, those who faced that terror along with us.  The friends and strangers who left their comfort zones to face a horrible injustice.  The doctors, researchers, and nurses who risked their own reputations to stand up for what was right.  Though we have been unsuccessful in our efforts for justice, we at least have the knowledge that there are courageous people who chose to step up and act.  Through you, and with you, we hope to find peace.

Thank you, 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. 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. It is okay to post a link to this page.

It is so profoundly upsetting to see reports like this come out. Even though they validate everything we have fought to have recognized about why Rowan’s death was completely preventable, it will always be too late for Rowan……

The summary statement in the abstract for this report states: “We conclude that Williams syndrome confers a significant anaesthetic risk, which should be recognised and considered by clinicians planning procedures requiring general anaesthesia.”

When reviewing the existing literature on WS and anaesthesia, due to the low quantity and quality of these reports, they also conclude “In the opinion of the authors this makes it impossible to designate any patient with Williams syndrome ‘lowrisk’ for anaesthesia or sedation.”

http://www.ncbi.nlm.nih.gov/pubmed/25233176

Anaesthesia complications 2014

 

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.

“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.