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  • Rowan’s death is a heartbreaking tragedy that should and could have been avoided.  From our daughter’s first hospitalization in infancy when she was diagnosed with WS, we were thrown into the deep end of the pool in terms of learning how to advocate for our child in every sense of the word.  We are fortunately well-educated professionals with access to some of the best healthcare in the world, and still without our own initial gut instincts and later independent research and insistence upon meetings with her entire medical team, she still could be unwittingly placed in harm’s way by the medical professionals who should be helping her.   It shouldn’t have to be an independent research project for every WS family to do our best to keep our children safe.
    When our daughter’s prolonged QT interval was first noticed and discussed with us after a cardiology visit in 2010, I started reaching out within the WS community to tell everyone what I was learning and actually sent a link to the CHOP paper out on the WSA list.  I contacted the Williams Syndrome Association directly to ask that they better publicize this information in conjunction with the risks for sudden death due to anesthesia, and many OTC drugs and other prescription meds that many of our kids take every day. and didn’t see any action taken.   At the Boston convention in July of 2012 they finally had a session on Prolonged QT with Dr. Tom Collins as a speaker (one of the authors on the paper from CHOP) and I attended but essentially learned nothing new from the session, other than his specific threshold recommendations for when to begin medicating.   Then, there was all this discussion about the Prolonged QT being “new” information – I addressed my frustration with that “new” label via email – in my mind it’s inexplicable that it took the Williams Syndrome Association TWO YEARS since my initial request to really do something to bring more attention to it.  Over that time, several of our friends with kids with WS have found out they have the Prolonged QT as well, and in some cases it has changed what they are doing with daily medication on anxiety, attention, etc.   – in all cases it should better inform us what we should be asking for with anesthesia.  I personally can’t help but wonder if some of the unexplained sudden death cases in our community are related to this.
    We’ve participated and will continue to do so in helping to raise funds in conjunction with WSA awareness month.  It is my fervent hope that our latest fundraising efforts will be first targeted to better support the families in our WS community with information on EXACTLY what to discuss with our medical teams prior to anesthesia, including the most recent links to all of the medical literature that they MUST reference.  Nothing is more important than keeping our kids from being accidentally killed.  My continued sympathy, love and admiration to Rowan’s family.  (Williams Syndrome mom)
  • Our son had surgery after all other treatment options had been exhausted.  Before the surgery, we were told by (his hospital) that because of our anesthesia concerns, we would be meeting with the anesthesiology team handling his case at his pre-op appointment to go over any concerns and present any literature that we felt was important. We scoured the internet for case studies, found a few, and printed those and the WSA info. No such meeting ever happened. The hospital said the team did not have time that day and they would try to get our info packet to the doctors before the surgery. I had to throw a stark raving mad fit to get any attention, to the point of saying I would withdraw consent for the surgery because of their negligence (which I think they correctly heard as “I’m going to sue you.”) I finally got a call the night before the scheduled surgery. The anesthesiologist had received my packet and was reviewing it that night, and they worked out an approach based on the research I had presented. Based on one highlighted portion of one study I presented, they decided to use a different cocktail of anesthetics than normally used, and they put him in an OR that was set up for immediate intervention in the case of a cardiac event or arrest. They also agreed that he would not be discharged as quickly as normally prescribed (it was technically out patient) because of the continued risk of cardiac events due to the anesthesia even after waking, which I had pointed out from another study. None of those interventions would have ever happened without the research I did, and in the midst of the heart wrenching late night googling I was doing trying to find whatever I could to protect my son, I couldn’t help thinking “why on earth am I the on telling the doctors what to do?!?” I am not qualified to interpret medical information or make recommendations, but it was very clear to me that if I didn’t no one would. Because (our son) does not have evidence of cardiac problems based on echo and EKG’s, they put him in the category of “not at risk”. Which is of course ridiculous; every child with WS is at significantly additional risk under anesthesia, and to say otherwise is ignorant.. It would have been so incredibly helpful to have a prepared packet of journal articles and very current medical information and recommendations by qualified medical experts, as well as how to go about getting those recommendations implemented by the hospital, and what to do if the doctors/hospital on not working with you.. And even still, as in the case of Tracey and her family, even when they do and fought hard for their sweet Rowan, parents ultimately have to step away and place their child’s life into the hands of the doctors. We must find a way to turn the tables here. Our children’s doctors should be vigilantly educating parents on the risks associated with anesthesia, and explaining to parents the treatment plans in place in order to manage those risks when surgery is unavoidable. Not the other way around. (Williams Syndrome mom)
  • We have a magazine type programme (in the UK), “Breakfast” which picks up all sorts of bits of current news etc. This morning they began talking about MRIs, how stressful they were and scary for many people. They moved onto young children and a little 4 yr. old boy with a brain tumor who needs frequent MRIs. The hospital had begun working with play therapists, together with graded time around and in the MRI scanner; so far 20 children had managed an MRI without sedation. The Consultant talking to camera about it, said in a very matter of fact manner, that it was important to try and avoid sedation for children as there was a slight risk for many and for some children that risk was very high. (Rowan’s Grandmother, 2014)
  • I want to thank you from the bottom of my heart for sharing your story with our family and the many families who have a loved one with Williams Syndrome. There is absolutely no doubt that you have already saved lives with the information that you have articulately written in your website about Rowan. You have already stopped the senseless “over-testing”, incorrect implementation of testing, and unnecessary testing under general anesthesia, by providing families who are in a similar boat with a real life story… Your story pangs in my heart, and I have to admit that our son, who I think was about the same age as yours, also had a similar test. He had an MRI, just to check and see why his blood pressure was elevated.. I knew that there was a risk, and had read on the WS website that the risk is higher for someone with WS than for someone without it. And when I asked the hospital to let me speak with the anesthesiologist prior to the procedure, they would not, telling me that they didn’t know who the anesthesiologist would be, and therefore I could not speak with him/her. Then when I insisted, they said they would try to call me, and never did. I reluctantly went through with the procedure and our son was put under, and the procedure went ok. After finding out about how narrow his aorta is in his abdomen, (that is what the test revealed), they did nothing about it. In other words, what we learned from the test, did not help my son in any way, however, it did put him at a real risk of death. After the procedure, I went back in my mind and realized how incorrectly they did everything! There was only one anesthesiologist, who wasn’t even a pediatric doctor, and no one with any cardiac background was there. No testing was done prior to the anesthesia, and NO IV was inserted until AFTER he went under. All of this is wrong, wrong, wrong. And I had a bad feeling about it at the time, but was afraid to stand up for myself, my son, and my family, simply because I am just a Mom, and the doctors should know what they are doing! Plus, I was “poo pooed”, and told not to worry about anything.  (Williams Syndrome mom)


  • I cried, was angry and felt hopeless when I was reading about your horrible, inexcusable tragic loss of beautiful Rowan. I am so truly sorry. I wish I could carry some of your pain. I am so in awe and respect at the strength and courage it must of taken to write the website… Your website couldn’t have come at a more poignant time. We took (our son) to the cardiologist on April 16…  The cardiologist wanted us to take his blood pressure for a week at home and see if it goes down while he orders a cardiac MRI (mra) to evaluate descending aorta (based on blood pressure that was elevated and uneven).. The cardiologist asked why we were so upset about MRI and I said I don’t know how how he will react in the tube. He said “don’t worry we can always sedate him”. At this point I was nervous because I have done a little research about anesthesia (because) he had a horrible (previous) reaction to the anesthesia and wouldn’t wake up for two hours of being bagged with oxygen. Even the anesthesiologist was stressed. Of course, she was not a pediatric anesthesiologist. For the second experience with anesthesia it was an endoscopy. I made sure he had echo (which took wrangling) before and a pediatric anesthesiologist and I still was met with resistance and not taken seriously based on WSA website info. I felt The Dr ‘s blew us off about our concerns… Luckily, he woke up. (Willams Syndrome mom)


  • For whatever it is worth, I feel the standard of care is awful, extremely negligent and somehow we all need to make a difference..We have had 3 negative experiences all at the same (and only) children’s hospital in our state: .. 2. She had a sedated MRI.. the MRI was negative  (it was the neurologist’s idea, her development is delayed, but I’m not sure that necessitates an MRI); 3. Our most recent experience (7/2013), I had met with the chief of anesthesia at least a week before my daughter’s dental surgery/endoscopy to be assured that a cardiac-anesthesiologist would be with my daughter the entire time. When I saw the chief in the pre-op room, he didn’t even recognize me, nor my daughter and the anesthesiologist was not a cardiac one and was having to quickly change around the medications based upon my mother’s notes from the anesthesia articles that we have (scary right!) and the anesthesiologist then had to take extra time to clean out the tubes/hoses that administer the anesthetic agents, all while the GI dr. was increasingly growing angry and pushing the anesthesiologist because the change was delaying her schedule.. I had to hold her down as a mask was placed over her face, I did not even want to sign any consent forms. (Jennifer, WS mom)