Boston Children’s Hospital Donation
An excerpt from Dr. Rahul Rathod’s letter to Sisters at Heart on his planned use of our donation for his research project. Here he references Jamie O’Hanlon’s daughter, Scarlett. Dr. Rathod is an attending physician in the department of Cardiology at Children’s Hospital Boston and an Assistant Professor of Pediatrics at Harvard University.
“I just wanted to say thank you again for your generous donation. As I mentioned Friday, I am always humbled when parents who already have so much going on in their lives make this kind of effort to help further research. I have been giving this a lot of thought, but I wanted to get your thoughts on how best to use the money. As you know, Scarlett’s defect is pulmonary atresia with Intact Ventricular Septum (PA/IVS). Because Scarlett’s tricuspid valve and right ventricle were near normal size at birth we were able to open her pulmonary valve in the cath lab and she has done very well since. Many kids with PA/IVS will have a small tricuspid valve and/or right ventricle. This makes that side of the heart unusable and the kids have to be treated as having a single ventricle (instead of two ventricles). This requires a dramatically different approach and these kids need at least three surgeries in the first couple years of life. That last surgery is called the Fontan operation. A lot of my research is focused on how to risk stratify these ‘Fontan’ patients (using imaging) in order to help identify the ones who need earlier intervention and keep them healthy in the long run. It’s a long road and these patients have numerous complications. The problem with most studies (including ours) is that they are single center studies with not enough patients. The only way we can learn more about this population is to collaborate and join forces with other centers. Towards this goal, I have led an effort to develop an international Fontan registry. We are calling it the “Fontan Outcomes Registry using CMR Examinations” (FORCE) study. I have assembled a leadership group that includes members from CHOP, Texas Children’s, Univ of Michigan, Toronto Sick Kids, and Nationwide Children’s. We have an additional 12 centers in North America and Europe who have said they want to participate. This will be the largest Fontan imaging registry of its kind and will help us leapfrog our understanding of how to take care of these patients. Obviously, this is a large and ambitious effort that has a lot of financial needs. With your permission, I would like to use your donations to support this effort… Thank you again. Your efforts really do inspire me to work harder.”
Dr. Rahul Rathod