Handouts and Forms
California Heart Connection
A support and information network for those with congenital heart defects

Copyright  2002-2019  California Heart Connection.  All rights reserved.
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.  

Physicians:  These forms can be personalized and modified. A space has been created in the upper right hand corner of each form for physicians to include their contact information. Simply input your name, address, phone, email and fill out the information for patients on forms.  Patient retention of information is much higher when having written instructions to which to refer.

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.

Click on each form to download.  

Help When Getting the Diagnosis

Resource Guide - updated Feb 2019
(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)

California Resource Guide - updated Feb. 2019
(6-page handout)
Same as above, with  resources specific to those in California.

What to Ask the Surgeon and Hospital - (2-page handout)
A list of questions to help compare hospitals to aid in the patient's decision-making regarding treatment options

What to Ask the Insurance Company and Common Insurance Terms
(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.

Internet Resources - (1-page handout) 
Selected online resources for heart diagrams and information on specific diagnoses

Diagnosis and Hospital Contacts Form - (1-page form)
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

Emergency Information Sheet -(1-page form)
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.

When to Call the Doctor or 911 - (1-page form)
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.

Follow-up Care - (2-page form)
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.

Medication Tips - (2-page form)
Useful tips on administering medications properly and more easily to children and infants which is often a source of significant stress for families.

Medication Summaries
(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

Preparing For Your Child's Hospital Stay - (3-page handout)
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.

Medical Specialists - (6-page handout and form)
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/Information for School

Overview of Services (new)
Information on Early Intervention, 504 plans, IEP's, Health Plans, and information on receiving accommodations in college

Developmental Issues and CHD (new 2017)
Information on common developmental delays, learning issues and behavioral problems that may affect some children with CHD.

Physical Activity Form - (1-page form)
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.

Health Summary Form for School
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.

Sample 504 Plan for School (updated 2013)
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.

Please let us know if you find these handouts and forms helpful. If you have any feedback on these forms, or suggestions for additional handouts or forms, please email Debbie Hilton Kamm at info@caheartconnection.org. We are always looking for additional information that can help those with heart defects.