Preparing for the first day of school is a nerve-wracking time for every parent, as it symbolizes the next phase of a child’s life. For parents of a child with HLHS or any congenital heart disease, the worry and stress are even greater. That’s why we sat down with Cynthia Hinck, RN Care Coordinator at Mayo Clinic to seek her advice on what parents should tell their child’s school when it comes to HLHS.
Q: What’s the most important issue that parents should bring up to the school system?
A: Once you inform your child’s school of his or her condition, the absolute most important subject parents should bring up with their child’s school is the issue of gym class. Most schools are very receptive nowadays to children with physical restrictions, but there are a few that still require letters from a child’s care team. If that is the case, your child’s care team will be able to take care of providing the necessary documentation for you.
Q: Will the school know how to meet my HLHS child’s needs?
A: It all depends on the school. It doesn’t matter if the school is in an urban or a rural setting. Some schools are just more experienced and better equipped when dealing with congenital heart diseases. That being said, your child’s care team is always willing to help answer questions the school may have about your child’s needs. It would also be helpful to provide the school nurse with some reading materials on HLHS and explain exactly what it is to help the staff understand, just in case.
Q: How will I know if my child is physically up to a full day at school?
A: Your child will be fine during a full day of school. Your child knows his or her physical limits, and he or she will self-regulate. It is important to just let him or her be a kid and enjoy this time in your child’s development.
The Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) is a collaborative network of specialists bonded by the vision of delaying or preventing heart failure for individuals affected by congenital heart defects including HLHS. The specialized team is addressing the various aspects of these defects by using research and clinical strategies ranging from basic science to diagnostic imaging to regenerative therapies.
Send an email to invite people you know to join the HLHS page.