We’ve all heard and probably said something similar in the past. It can be easy to think you can do it all and never ask for help from others. But let’s not forget that you can’t pour from an empty cup. Raising children, being a good partner, acting as a caregiver, just being a good human takes a lot out of you. Finding your community, your people, will refill your emotional cup and help you keep giving to those who need you.
Parents raising heart warriors or adults with congenital heart defects can come under even more stress than the average person. Let’s be honest, living in our current world is hard. Trying to live our best lives on a day to day basis while still eating well, sleeping enough, and not letting stress take over, is daunting. Adding in a chronic condition makes the above feel unattainable. Frequent doctor appointments, multiple day hospitalizations, procedures and surgical interventions can be overwhelming. How can heart families expect neighbors and coworkers to understand all that is on your plate when they don’t see the day to day struggle and have never experienced it themselves?
According to the Centers for Disease Control, about 1 percent of children born each year in the United States are born with a congenital heart defect (CHD). New parents often feel overjoyed and scared to be trusted to care for their tiny offspring right after leaving the hospital.
Having the added burden of a new diagnosis adds to the fear of the unknown for heart families.
“What can we expect?” “How do we handle the challenges the baby will face?” “How will our older children adjust?” These are just a few examples of the constant questions and fears running through a new heart family’s mind. When you are surrounded by those who have already walked the path you now tread, your burden can feel so much lighter, the path becomes less daunting. Seeing families with older children or adults with CHD who are living and thriving will give you hope for your own fledgling heart warrior’s future. A mental health provider familiar with the Healing Hearts CHD community had this to say:
As diagnoses and treatments of congenital heart defects advance, the population of those with CHD grows. Adults living with CHD now outnumber children living with CHD. Adults with CHD may face further procedures, difficulties with health insurance, missing work, financial concerns, and fears or questions about starting their own family. Knowing there is a mental health provider, as well as other adults with CHD to talk with, can ease your most pressing fears. Studies have also shown that increasing social connections improves overall resilience and immune function, and may lengthen your lifespan.6
Parents often say when their children are born, the parent’s heart is now outside their body. The worry a parent has for a child is ever present. Parents acting as caregivers for their heart warrior child can have additional concerns for the CHD child’s and their sibling’s mental health. Children diagnosed with CHD often spend more time away from their peers, missing school and extracurricular activities. This may lead to the child having signs of increased anxiety, ADHD, and mood disorders. Caregivers can suffer from isolation, frustration, depression, anxiety, and fatigue. Turning to the heart family community and a mental health provider for advice is a priceless gift.4
Studies have shown that mental health is best supported when built into the routine healthcare of those with a chronic health diagnosis.3 Support groups can play a beneficial role in the healing process between medical treatment and emotional support. Sharing common experiences can help relieve fears of the unknown or give insight into day to day challenges.5 The Healing Hearts Project (THHP) has an online support group consisting of over 440 families, both adults with CHD and caregivers, who live in Northeast Florida, Southeast Georgia, and surrounding areas.
Healing Hearts and Minds is a new program from THHP offering financial assistance to connect with a licensed therapist for face-to-face or virtual sessions. A recent group therapy workshop allowed families and adults with CHD to come together with Michelle Newman, a licensed provider, to share and learn tools to navigate life with CHD. One group member said, “I am grateful for the support I have found in this community." Another offered, “I was surrounded by others struggling in the same areas I was, which made it easier to feel comfortable expressing.” And a third stated, “It surprised me how much I needed this group. Having the support and hearing the others sharing helped so much. It helped me feel not so isolated. We all struggle with a lot of the same things.” Sharing a burden always makes it feel lighter. Knowing you are not alone brings some light to what could be the darkest time of your life.
Reaching out for help can be the hardest step you take in life, however it can produce the greatest reward. The Healing Hearts Project has been helping the local heart community by supporting families and individuals with CHD in the Jacksonville, Florida area for many years. Healing Hearts and Minds is their newest way to bring assistance, both mental and emotional, to the heart warriors in our local area. Feeling connected to others has been found to increase self-esteem and empathy and decrease feelings of anxiety and depression.6 Having the tools a licensed mental health provider can share will improve your outlook and daily life. Feeling connected to other heart families will decrease feelings of isolation. Contact the Healing Hearts Project for more information about Healing Hearts and Minds today.
-Erin McGrath, BSN, RN
American Heart Association News, Parents of kids with heart defects at risk for PTSD, other mental health issues, February1, 2017 https://www.heart.org/en/news/2018/05/01/parents-of-kids-with-heart-defects-at-risk-for-ptsd-other-mental-health-issues
Lebherz, Corrina et al, Anxiety and Depression in Adults With Congenital Heart Disease, National Library of Medicine, June 2022 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9253420/
Funk, Michelle, Integrating Mental Health into Primary Healthcare, National Library of Medicine, March 2008 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2777555/
Welch, Ashley, Children With Congenital Heart Disease 5 Times more Likely to Have a Mental Health Disorder, Study Finds, EveryDay Health, January 2021 https://www.everydayhealth.com/heart-disease/children-with-congenital-heart-disease-times-more-likely-to-have-a-mental-health-disorder-study-finds/#:~:text=Pediatric%20congenital%20heart%20disease%20(CHD,condition%2C%20according%20to%20new%20research.
Mayo Clinic Staff, Support Groups: Make Connections, Get Help, March 2023 https://www.mayoclinic.org/healthy-lifestyle/stress-management/in-depth/support-groups/art-20044655
Martino, Jessica et al, The Connection Prescription: Using the Power of Social Interactions and the Deep Desire for Connectedness to Empower Health and Wellness, National Library of Medicine, October 2015 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6125010/