Roaming Resources

When we were told of Katie’s diagnosis, the first thing that we wanted was more information.  We wanted to know as much as possible about HLHS, so that we could feel as educated and prepared to deal with what was to come.  We were Katie’s advocates and we needed to have the most accurate information to help her in the best way that we could.  Fortunately, both of us had laptops that we could bring with us to the hospital and use to research.  The cardiology team was wonderful in giving us suggestions as to which websites were appropriate and contained accurate information.  The times that we felt the best prepared were the times when we felt that we had the best information. 

We were fortunate that we asked lots of questions before researching and had the resources to use while in the hospital.  Unfortunately, many families do not have the same resources that we had.  One of the last things that we were willing to do was to leave Katie’s bedside to look up information on a computer.  The roaming resource program will provide the pediatric ICU with laptops that can be used in the patient’s rooms.  These laptops will contain preloaded websites and information regarding congenital heart defects.  The sites and information will all be approved by the Pediatric Cardiology team at Yale. Our goal is to help remove the anxiety, simplify the research, and improve the quality of learning for families about their child’s condition, ultimately improving the advocacy that parents can provide for their child.