Thursday, June 12, 2014

Second Opinions

There are 120 centers in the US that perform congenital heart surgery and they all have varying degrees of experience and differ in their quality and delivery of care. St. Louis has two highly rated pediatric heart centers; St. Louis Children's Hospital and Cardinal Glennon Children's Hospital. In my research, both cardiothoracic surgical teams have tons of experience (over 20 years) and fairly good outcomes however when looking at the pediatric care department as a whole the scales seem to tip towards St. Louis Children's for a number of reasons. I will do a post in the future comparing the two and what led to our decision once it is made. **In light of the news covered below we are now looking into Boston Children's Hospital as an option as well**

The Second Opinion Update: 

Yesterday was our originally scheduled ECHO at Cardinal Glennon. This was initially going to be our first appointment however it became our second opinion when the soonest ECHO appointment was over three weeks out and I did not have the patience needed to wait that long. Since the baby is still growing and developing, as well as the heart, the purpose of the second opinion at this point was not to confirm diagnosis or find differences. It was more about getting a feel for the facility, resources, and the team of professionals that will be available to us before, during, and after the birth and surgeries. That being said, differences were found.


During the ECHO at Cardinal Glennon there were two additional anatomical differences in the diagnosis. One, the right ventricle seems to be rather small now and two, the tricuspid valve seems to be straddling the VSD or hole between the ventricles. I contacted our pediatric Cardiologist at St Louis Childrens and asked if she could look back over our ECHO and see if these were possibly overlooked but based on the images they got 3 weeks ago, neither of those seemed to be the case. However, as I mentioned, things can and often do change as the heart gets larger, which is why the method of treatment is not decided on until after birth. If the two "new" defects remain, that will narrow our surgical options to the one ventricle pathway via the Glenn and Fontan procedures. This is not the option we were hoping for as the risks of multiple surgeries are higher and the need for a heart transplant later in life is often higher as well with these procedures but we will remain positive and pray. 


Lots of prayers for wisdom and discernment, phone calls, messages, and research are going into the decision and we will likely take a couple days before deciding. This first step is by far the most important one in our journey. We want to make the right choice in receiving the best care possible for our little guy.

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