In our case, things worked out very well staying in Seattle. Wren had a coarc and aortic arch repair and a cath procedure for his valve. We were very happy with the surgical team and received great treatment and support in the Cardiac ICU at Children's. We were 10 minutes from home so there was a huge benefit for our family and elder child and granny to stay home and keep us all sane.
Still, at the time it was a huge decision and I was frustrated with the lack of data on success rates at different pediatric heart surgery centers. I think I would have felt even more desirous of that data if I had read this article I received from LittleHearts on the difference in survival rates at centers of excellence in heart surgery:
The study shows that an infant's risk of dying in the hospital during or after their operation varied greatly depending on the number of each procedure performed that year at the hospital where they were treated. Mortality rates ranged from more than 10 percent to less than 1 percent for the arterial switch operation, and from more than 35 percent to around 10 percent for the Norwood procedure.
And the researchers conclude:
"For the more routine congenital heart surgery, outcomes are excellent everywhere," says Hirsch. "But when it comes to a child with a complex defect, it's important to send him or her to a center of excellence. And the parents of these children are often so overwhelmed by their sudden situation, it will be important to develop the systems and support that will help them get to the right place."
I hope this kind of support and these systems are developed quickly. Right now, the decision is shaped by the cardiologists (who makes a recommendation), the surgeons and the family who may or may not have the resources to conduct independent research to inform their choice. At our local CHD family support group we are frequently visited by families who have received a diagnosis and are trying to select a hospital for the surgery. They are almost always confused and seeking access to impartial and potentially life saving information.
Cardiologists are not without bias. They may believe their hospital program is able to perform surgeries well despite the better results elsewhere. Surgeons who want their team to become a center of excellence may try and persuade families to stay at local hospitals even though they have not (yet) achieved the reputation or experience of the centers mentioned. These factors need to be taken into account. Families who have chosen an institution may recommend it even though their child has a completely different CHD and prognosis. If data becomes available that will be a great step forward.
Now that there is added information to show the importance of Choosing the right institution there will be added pressure on families to make "the right" choice and perhaps added pressure on Insurance companies to cover inter state heart surgery referrals.
Here is the full reference to this article:
University of Michigan Health System (2007, December 20). For Babies With Heart Defects, Death Risk Is Far Lower At Most Experienced Hospitals. ScienceDaily. Retrieved December 20, 2007, from http://www.sciencedaily.com /releases/2007/12/071217092926.htm