Archives for category: toddler loss

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

As we wander through the world, amongst the people whom I now refer to as the “uncomfortable people”, I often wonder what makes them so uncomfortable.  Uncomfortable with grief, I get that.  A year ago, that would have been me.    Don’t know what to say, don’t know what to do, maybe it’s best to not say anything or pretend the grief is not there.

But there’s something more.  Our grief, together with our story, seems to bring about a different kind of “uncomfortable”.  The kind that makes people feel the need to be different than us.  The kind that makes people feel the need make their child different from Rowan.

Rowan had differences.  He had a bigger smile, he had a louder “Hi!”.  He spoke a different language (sign-language) while other kids learned to talk.

And Rowan was the same.  He encouraged a friend to crawl, he loved to swing, he learned to kick his feet and blow bubbles in the bath with his big sister.  He loved his family and friends, and the world around him, and made new discoveries in that world each and every day..

To those differences and similarities, people say “Of course, of course”.  We are in the 21st century, we have come a long way from institutionalizing those who have external differences.  Of course we understand.

But.. here’s where this post in going to get uncomfortable, and I forgive you if you choose to stop here.   Well, sort of.

Because what I need to tell you is that Rowan was the same.  Rowan was the same as your child.

His entire life, a common cold was the only medical ailment that bothered him.  No visits to the ER, no hospital stays, no medications.. his entire life beyond the first four days.

Yup, he had diagnostics.  Just like your child.

And he saw lots of doctors, because he was different, and doctors were interested.  In his entire life, how many of those diagnostics revealed an ailment that needed medical treatment?  How many were more than a quick look to say “Everything looks good”?  Just one.  The one that killed him.

Rowan was the same.  That’s right.  The same as your child.  The same as any two year old visiting the hospital for a routine test.  Has your child ever received an x-ray, an MRI, an ultrasound, a lab test?  Because something about your child was slightly different than the average?  Something that made a doctor say, “we just want to take a closer look.”  If yes, than your child is exactly the same.  Rowan walked into the hospital, exactly like your child, and was supposed to walk back out an hour or so later,  just like your child.

“Wasn’t Rowan sick?”  Good question.  No one will ever know.  We know the doctors said he was “healthy” up until moments before he was killed by anesthesia.  But we will never know how “sick” he was, or if he would have lived a full and happy life with a heart that was “different” just like many before him. We will never know if he would have needed a risky surgery, or if that surgery would have been a great success.  We will never know because nobody looked at his heart before anesthesia.  Nobody looked before they gave him the poison that killed him.

So I guess that I’m trying to say that I’m okay that people are uncomfortable.  I understand why people need to feel like what happened to us cannot happen to them.  I understand why they need to hold onto the “knowledge” that their two year old is safe.  Because my empty arms are a scary site, and I understand why people  look away.

I don’t write with hopes of scaring people, or vilifying the medical practices that have saved many lives.  I write with a hope that people will look at my empty arms, and with a plea that they will face the scary reality that those arms hold.  Rowan died because too many people looked away, please don’t look away now.  For each time you do, Rowan life loses just a little bit of its importance in this world.  Is that what you would want for your child?

 

 

 

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