My mom once told me that most people have to wait a lifetime to do something really remarkable…something so important, it would change their life or the lives of those near to them. I only had to wait four and a half years.
Kailin, 17, talking about having surgery to fix an atrial septal defect (ASD)
The Heart Experience Journal is a collection of stories and personal experiences from patients and families about living and coping with pediatric heart conditions. It represents the “collective wisdom” of these families as well as their health care providers. The Heart Experience Journal was created by the Boston Children’s Hospital Department of Psychiatry and Heart Center. A group of parents and health care providers reviewed all contributions for safety and appropriateness. The Heart Experience Journal was originally created in 2000 and was recently updated in 2017.
Child & Adolescent Stories:
Learn more about the group of kids, teens, and young adults who contributed to the Heart Journal.
- Finding out and reacting to the diagnosis
- How it feels: arrhythmias and pacemakers
- Deciding on treatments
- Preparing for surgery and talking with the medical team
- Having surgery or a procedure
- Staying in the hospital and ICU
- Recovery and complications
- Dealing with scans, procedures, and medications
- Taking medications
- How it’s affected me
- How it’s affected my family
- Telling friends and others
- How it’s affected me at school
- Getting older and taking more responsibility for my health care
Despite having several open-heart surgeries and a pacemaker since she was 4, Emily leads an extremely active lifestyle. Click on the video to watch Emily’s story. - Coping with scars, anxiety, and pain
- Facing challenges
- My activities
- Pacemaker and Heart Camps
- How it affects my future
- Advice for others
- Advice for health care providers
- Words of wisdom
Caregiver Stories:
Learn more about the group of caregivers who contributed to the Heart Journal.
- Finding out the diagnosis
- Reacting to the diagnosis
- Coping with a fetal diagnosis
- Looking up information and getting a second opinion
- Making a decision on treatments
- Day of birth & initial surgeries
- Preparing for surgery
- Surgeries and procedures after birth
- Staying in the hospital
- Coming from out-of-state
- Going home after surgery
- How I help my child cope
- How it’s affected our family
- How I coped as a parent
- Talking to my child about their heart condition
- My child’s activities and pacemaker camps
- Working with medical teams
- Additional resources:
- How it affects my child at school
- Working with the school
- How it affects my child socially and with friends
- Transitioning to college and encouraging independence
- Challenges
- Importance of finding community and support
- Connecting with other Heart families online and in person
- Thinking about the future
- Advice for other families
- What I’ve learned
- Words of Wisdom
Stories from the original Heart Journal published in 2000:
- Kailin’s Story: Born with ASD
- Lacey’s Story: A Truncus Arteriosus Miracle
- Deborah’s Story: Living with heart and lung problems
- A Grandmother’s Diary: Learning about TGA
Clinician Insights
Meet the group of Heart Center Clinicians who contributed to the Heart Journal.
- What is your role in the Heart Center?
- How should caregivers talk to children about their heart condition and upcoming procedures and appointments?
- How can families help their child cope with a heart condition?
- What should families expect during their child’s hospitalization?
- What support is there for siblings?
- What should families expect when it’s time to leave the hospital?
- What is the Cardiac Neurodevelopment Program (CNP)?
- What should families know about cardiac imaging procedures like MRI, Echocardiograms and CT scans?
- What should families know about ICDs and Pacemakers?
- What are common questions and concerns from patients and families?
- What are some things Heart Center families should know?
- What should families keep in mind when researching medical information online?
- Challenges and rewards of the job