I have been following a story of one of our heart friends, Waylon, in Kentucky. He is a little younger than Cecilia. I remember hearing about the program he was in suddenly shutting down and withholding information from the families. It sent a big "WTF" through our support group. It was incredibly shady how everything played out and I sympathized with those families. Can you imagine being oblivious that the program you trust your sons life with has shut down some time ago, and then being told secretly about this because your son is actually in heart failure and you need to transfer him in order to save his life.... What were they going to do? Let him stay there and die knowing they couldn't treat him and provide the care he needs? You can read the CNN article here . In the video on that article page, the hospitals Administrator claimed parents are not sophisticated enough to understand data (when asked about their mortality rate).
I, along with the majority of other Heart parents, were deeply insulted by that comment. The highest level of education I have is a GED, and I am "sophisticated" enough to understand a STAT or a RACHS score. RACHS= Risk Adjustment for Congenital Heart Surgery. I understand that the first operation my child needed is the most riskiest and complex congenital heart reconstruction that holds the highest mortality rate. If your patients and their family don't understand that, then you have failed at your job in explaining the Norwood Procedure. You have not been transparent. A look into where each congenital heart surgery falls on the risk factor list (rated 1 to 6, and 1 represents the least risk), click here
Parents and the public have a right to compare surgical volume and mortality rates. It's our right to choose what team we want for our child based on facts. I appreciate knowing that the experience and surgical volume of our original chosen center was incredibly far from ideal. I still chose to believe in that team at the time, and it was not an easy decision. I cant imagine not knowing the truth. It infuriates me that other families were not given the same truth and transparency. We have changed our Insurance policy twice now for our daughter Cecilia, to be able to see specific Doctors of our choosing. I strongly feel her quality of life depends on it. It's our choice, and all families should be given an opportunity to have information that they can compare with other hospitals before blindly trusting in a team with the life of your baby. Dear parents, if you are confused as to why surgical volume matters, please read these helpful articles that discuss how higher volume centers have less complications and undeniably better outcomes here and also this may help put things into perspective as well...The difference between wisdom and knowledge is experience. Though I knew these facts, I didn't know until our eyes were open during unfortunate experiences that compromised my daughters quality of life.
The University of Kentucky recently made public their mortality rates after pressure from the public, on this petition...except the response they gave the public was not exactly what we were asking for. This article states that the overall mortality rate for all combined surgeries dropped to 7.1% the year the heart program was closed. What parents want to know is their specific volume for each surgery, and the outcomes for each. They claim it is against HIPPA to report such outcomes in that manner. Other centers would disagree, as they already provide this exact data publicly.
Recently, Michigan (Motts) posted this article featuring Waylon, publicly announcing their statistics. I wholeheartedly respect them (and all of the other centers) for publicly showing their outcomes in their hospital year by year, in a detailed breakdown. I know of some hospitals that are not transparent with their online stats (they are misleading, taking credit of outcomes that occurred in another facility, and they are also misleading the public of a 100% survival), and then there are many more that just display no outcomes at all. Hopefully they will follow the example by these true Cardiac centers of excellence:
Miami Children's Hospital Cardiac team is very dedicated to empowering their patient's parents and families. They lead by example, and we highly respect them for it.
Their stats here
Boston Children's Hospital do more Cardiac procedures than any other center in our country. They have excellent results, and display their mortality rates in depth by procedure. Here you will find their outcomes.
CHOP is another leader in congenital heart surgery. They are unique in their public reporting. They give the public 3 separate ways to interpret their outcomes.
By complexity of surgery here
By specific procedure here
Length of stay (my particular favorite public statistic) here
Texas Childrens Hospital have their outcomes in a flipbook.
Their main Outcomes page to download flipbooks by specific year here
There are many other centers that display their outcomes, but I'm sure this is enough to get the point.
For families who have BCBS insurance: Recently I found a very interesting tool on their website. We are a part of the "CareFirst" subgroup based on our location, so I'm not sure if the process to find this tool will be the same in other parts of the country, just sayin'... After logging in, I went to a tab called "Manage My Money". On the right sided column, second from the top, is a link to "Hospital Comparison Tool". For category, I chose pediatric surgery. Then, I chose heart surgery as the procedure. Last, I chose "all" hospitals in the country (you need to type in your city and state, then choose within how many miles.) This took me to a database that showed the surgical volume, complications, ect for hospitals performing pediatric heart surgery. If they perform the procedure, you will find a "compare this hospital" checkbox next to their surgical volume. I could compare up to 10 at a time, to see how the insurance company scored them. Unfortunately, after consulting a Cardiologist on the accuracy of the data, it was found to be a couple years old and not 100% accurate. However, it is believed to reflect the size of the heart programs and nonetheless, still an interesting tool. I wrote a letter to BCBS first thanking them for the tool, but also asking them to update the results. If you also find this tool invaluable, and are a BCBS member, please consider joining my efforts by making the same request. It has so much more potential, and I encourage them to utilize it.