California Heart Connection is committed to providing support and information to those with congenital heart defects. The following articles, handouts and forms are provided as a courtesy to help improve communication between physicians and patients to increase patient understanding of the many issues involved and to improve outcomes of those with congenital heart defects.
Parents/patients: Please feel free to download these handouts and forms to help guide you in asking questions of your physicians. Please note that the information provided is intended to aid in communication with your phsyician, and is not intended as medical advice. Always verify information with your cardiologist to ensure that it is up-to-date and accurate for your specific diagnosis.
Help When Getting the Diagnosis
(6-page handout)
Compiled list of information critical to those with children with CHD (applicable nationwide). Includes information on medical issues to clarify with the physician, helpful products, Early Intervention services, insurance/financial information, and much more. This Guide is an invaluable tool for physicians, case managers and parents of children with CHD. (Also available in Spanish)
(6-page handout)
Same as above, with resources specific to those in California.
A list of questions to help compare hospitals to aid in the patient's decision-making regarding treatment options
(4-page handout)
Important terms to better understand coverage and costs with a list of questions to ask about specific benefits, restrictions, out-of-pocket costs, etc.
Selected online resources for heart diagrams and information on specific diagnoses
This form allows the diagnosing physician to put in writing the name of the diagnosis, treatment options, and hospitals which perform those treatments. It includes space to list important contacts such as the surgeon and social worker.
Emergencies and Follow Up Care Forms
Information every parent should have available in case of emergency with space to fill in important information. Copies can be distributed to caregivers, school administrators, and kept in the car or other areas in case of emergency.
Form to be filled out by physician which delineates which symptoms warrant a call to the doctor, or a trip to the ER. Helps to decrease parent's anxiety trying to determine the severity of a medical issue and gives them clear instructions for specific symptoms.
Overwhelmed parents may be confused as to the many different follow-up and other appointments that are necessary. This form allows physicians to fill in approximate timelines for future appointments, vaccinations, therapies, etc. which helps parents keep current with important medical appointments.
Useful tips on administering medications properly and more easily to children and infants which is often a source of significant stress for families.
(2 pages each, 8 common medications)
Benefits and possible side effects of many common pediatric heart medications, with fill-in area for physicians to indicate dosage information and special instructions such as what to do if a dose is missed, storage information and more. Medication summaries courtesy of PedHeart Prints Patient Education Software, developed by Scientific Software Solutions.
Hospital Stays
Tips and suggestions for preparing for surgery help parents understand what to expect, what to bring, and questions to ask prior to a procedure or hospital stay.
Families are often confused about the function of each of the different medical specialists they come in contact with. This form includes a description of different medical specialties and appropriate questions to ask each specialist. Space is provided to include contact information for each for referrals.
Forms for School
Form to clarify appropriate activities for the child with CHD. Excellent tool for clarification for parents, care-givers and schools so that the patient's health is not compromised, and the child is not excluded from activities that are not dangerous.
A simple form for teachers, substitutes, and others to know the major issues your child has, and what actions should be taken. Includes a confidentiality waiver so the information can be distributed to other parents or aides as needed.
A sample 504 plan that can be used as a guideline to bring up issues with school administrators. This is a very formal and lengthy example to show many of the issues you may want to cover. Some schools have their own forms and try to limit it to one page.
