Archives for category: Anesthesia

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.

“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.

Dear Mr. Sewell,

I am writing this letter in support of Dan and Tracey XXX’s request for a full investigation in to the negligent actions of three doctors involved in the care, and ultimately the death, of their three-year old son, Rowan. Those doctors are: Dr. Raymond Fripp, Cardiologist, Rady Children’s Hospital; Dr. Kathleen Kaya, Pediatric Cardiac Anesthesiologist, Rady Children’s Hospital; Dr. John Moore, Chief of Cardiology, Rady Children’s Hospital. As you may now know, Rowan was at Rady to have an elective CT angiogram to evaluate possible coronary artery stenosis. Rowan became hypotensive and bradycardiac while undergoing induction of anesthesia and did not recover from cardiac arrest. Rowan’s doctors and the hospital claim that Rowan died from a “pre-existing condition”, however, the facts surrounding this case do not support their claim. We ask that you investigate those facts, and the negligent actions taken by the doctors involved. Specifically:

Dr. Fripp did not provide accurate information to Rowan’s parents for informed consent, and deliberately misrepresented the risks associated with general anesthesia for children with Williams Syndrome. Additionally, Dr. Fripp did not offer Rowan’s parents, or inform them of, alternatives to anesthesia that carry little to no risk, such as play therapy— despite these alternatives being the standard of care for at risk children at neighboring Children’s Hospitals. 1

Dr. Kaya also misrepresented her knowledge of the anesthetic risk for children with Williams Syndrome and was negligent in her administration of anesthesia to Rowan on the day he died. Not only were the basic standards for all children not followed (e.g. no IV line placed prior to induction, inadequate cardiac monitoring during induction), but the specified recommended standards for children with Williams Syndrome were also ignored by Dr. Kaya.2,3 Their specific complaints are: the use of non-recommended anesthetic agent, the absence of ECMO in the CT room, no IV re-hydration to maintain hemodynamic balance, and inadequate monitoring.

Dr. John Moore deliberately misrepresented the primary reason for the CT scan in the medical record after Rowan’s death. Leading up to the procedure, Rowan’s parents were told a CT was necessary to assess the coronary arteries for signs of stenosis, which they now know if present, significantly increases the risk of sudden death under anesthesia.4 After Rowan’s death, the reason for the scan was changed to assessing his pre-existing SVAS and PAS, with no mention of coronorary artery stenosis. SVAS and PAS can easily be assessed using ultrasound- with no need for sedation or general anesthesia.

Dr. Fripp, Dr. Kaya and Dr. Moore, as well as the other medical professionals at Radys, treated Rowan as a low-risk patient, when published medical knowledge suggested he be treated as the highest risk possible. Unfortunately, these doctors have not learned from their mistakes and are still attempting to put children with Williams Syndrome under general anesthesia unnecessarily.5

A number of negligent actions and decisions made in Rowan’s case by his doctors resulted in his death, but for me, a parent of two small children, the most heinous offense was committed when Dr. Kaya called Rowan’s parents the night of his death, a call supported by Rady, and suggested that Rowan died due to the stress from crying while being put under. The utter hubris in this statement is sickening and concerning, and one of the reasons why I started an online-petition to ask the Department of Health to open an investigation into Rowan’s death, which is currently underway. We have collected over 4,800 signatures from individuals who are demanding the doctors be held responsible, and that action be taken to prevent more preventable deaths from happening due to negligence and mis-information. I have included this petition, as well as comments made by signers.

Myself, and over 4,800 people believe an investigation in to Rowan’s death is not only the right thing to do, but imperative for the safety of many other vulnerable children in your State. We hope you agree.

Sincerely,

XXXXX
1. A case report on anesthesia-related deaths of patients with WS and SVAS highlights “the potential risks of providing sedation or general anesthesia for patients with WS, SVAS, and coronary artery disease.” In: Horowitz PE, Akhtar S, Wulff JA, Al Fadley F, Al Halees Z. Coronary artery disease and anesthesia-related death in children with Williams syndrome. J Cardiothorac Vasc Anesth 2002;16:739-41

2. Stamm et al. suggest that every patient with SVAS should be considered high risk for myocardial ischemia. The authors point out that procedures that produce a sudden drop in coronary perfusion pressure, such as anesthesia, have led to acute myocardial ischemia and procedure-related sudden death. In: Stamm C, Friehs I, Ho SY, Moran AM, Jonas RA, del Nido PJ. Congenital supravalvar aortic stenosis: a simple lesion? Eur J Cardiothorac Surg 2001;19:195–202

3. A more recent study by Ergul et al. concluded that the incidence of coronary artery defects and myocardial ischemia in children with WS is much higher than previously thought. They went on to recommend more detailed non-invasive and awake testing before considering anesthesia, and the use of mild sedation rather than anesthesia if needed. “Many deaths have occurred during anesthesia/sedation …, suggesting that decreased cardiac output from anesthetic agents in concert with coronary artery abnormalities alter myocardial perfusion.” In: Ergul Y, Nisli K, Kayserili H, Karaman B, Basaran S, Dursun M, Yilmaz E, Ergul N, Unal SN, Dindar A. Evaluation of coronary artery abnormalities in Williams syndrome patients using myocardial perfusion scintigraphy and CT angiography. Cardiology J 2012; 19(3):301-308

4. In their review of the pathology of SVAS and the literature regarding sudden death associated with sedation and anesthesia, Burch et al. conclude that “with congenital SVAS, myocardial ischemia has been implicated in a majority of cases of sudden death occurring in conjunction with anesthesia or sedation. Features common to the reported cases are sudden, rapid hemodynamic deterioration associated with hypotension and bradycardia and lack of response to aggresive resuscitative measures”. They go on to further state that coronary arterial flow impairment can occur even in the absence of significant SVAS, and therefore caution should be taken regardless of the varying degrees of SVAS. In: Burch TM, McGowan FX, Kussman BD, Powell AJ, DiNardo JA. Congenital supravalvular aorticstenosis and sudden death associated with anesthesia: what’s the mystery? Anesth Analg. 2008 Dec; 107(6):1848-54

5. Comment from our online petition:
“I don’t even know where to begin… Reading this story is heartbreaking and I can’t imagine how this family feels. This story was brought to my attention a few months ago.. This hits very close to home. You see, we too live in San Diego and go to Rady’s hospital. My son actually goes to the same Cardiologist as Rowan did. Since my son was born we have had 3 Echo’s, All at Rady’s and all under sedation medicine. Most recently my sons heart went from Mild to Moderate and the Cardiologist said that giving my son sedation medicine has become more risky b/c once he eats the medicine its in his system and they have no control over it. Plus, when they do an echo it is with a nurse & Technician.. My Cardiologist suggested that our only next step would be to do an Echo under general anesthesia. Even though its more risky he would be in the hands of professionals and doctors and anesthesiologists in case something happened they would have “more control” I was very concerned obviously being that I have read so much on the WS Support page about the risks with our kids and anesthesia. I brought these concerns up to my doctor multiple times and I even brought up little Rowan b/c I had heard about him through one of our therapists whom we actually shared. My Cardiologist said it was the next step. At some point I just had to believe we were doing the right thing. But I was really scared and preparing myself for the worst. I happened to get a 2nd opinion 2 days ago at CHLA.. I was EXTREMELY surprised and shocked to have received a ECHO under with NO DRUGS AT ALL! I’m sorry but I have never been given the option. I had NO IDEA this was an option. We have sedated my baby 3 times for an ECHO and were about to put his life at risk under general Anesthesia because “this was our only option”. Are you kidding me? You can do an echo with no risk to my child’s life? You can imagine how i felt. This hospital has obviously not learned their lesson and although they did make us 1st case of the day and said he was “High Risk” They have put his life at risk unnecessarily 3 times. and were about to for a 4th. I’m sorry for the long post but after reading this I am heart broken for this family and because they shared their story I was much more aware of the risks and they helped possibly save my child. I will sign this petition and get every person I can to sign it too..”

*Note- it has since been determined that this child’s cardiologist is not the same cardiologist as Rowan’s (Dr. Fripp), but rather Dr. Moore, the head of cardiology at Rady

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

 

 

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.