Putting it all together: the 24th HEART BLOG article

Austin E. Wilmot, M.S.W., L.C.S.W.

Thank you for trekking with me through the journey of learning more about the world of children with CHD. Because the trip took us in many directions, this article is meant to organize the resources spread out over two years of articles.

Helping Your Child Understand CHD & A Cautionary Note About CHD Books For Children

• Everyday things that illustrate heart function: making heart function interactive at home

• Thinking of the heart as a house: creative concepts for children to understand their "heart house"

• Animated videos for children with CHD: easing anxiety and building child-appropriate understanding

• Children’s books in “CHD families”: don’t judge a book by its cover

Hacks For Managing Health Information

• Your child's cardiology records: a system for order, containment and peace of mind

• Using medical ID on iPhone: critical information at a glance for yourself and emergency responders

General Resources

• Knowing where to find care: CHD specialists both domestic and abroad

• COVID-19 & children: how drawings can be helpful in accessing a child’s inner life

Getting Pointed In The Right Direction

As I was reviewing the past writings, it became apparent that the material was suited as a kind of curriculum grouped into three different "classes" for "Heart Parents". Class 101 will lay a foundation for understanding child development and thinking about the intersection of CHD and mental health. Class 201 will take up the use of case studies of children with CHD to allow for a closer experiencing of the child's inner, emotional world. This class also invites the parent to think more introspectively about their own experiences, motivations and feelings. Class 301 addresses a selection of issues that can bring difficult feelings to the surface. This class also includes, as the last piece, an invitation to write about your own story, now informed by the learning and new perspectives gained from this course.

Heart Parents Class 101:

Introduction to Thinking About Development, CHD & Mental Health

• “Play is the work of childhood”: Understanding the Importance of Play

• How to talk about CHD: Two systems of self-regulation in “CHD families”

• Understanding guilt in "CHD families": the how and why of guilt reactions in children and parents

• The dangers of forgetting the “Heart Worrier” inside your “Heart Warrior”: Understanding the impact of medical trauma and language on identity

• The emotional meaning behind physical symptoms: decoding the bodily expression and transmission of heart worries in heart warriors and their parents

Heart Parents Class 201:

Case Studies & A Deeper Dive Into The Inner, Emotional World Of The Child With CHD

• The traumatized child with CHD: understanding the traumatized child’s broadcast and how we respond

• Questions to ask (yourself) when looking for a therapist for your child: the psychotherapy series

• Hidden meanings of actions and reactions of children in therapy: the psychotherapy series

• The 911 emergency in the psyche of a 12-year-old boy: Understanding OCD in children with CHD

• Some thoughts on saying "special" and "heart warrior" in the CHD community: real and false identity

Heart Parents Class 301:

Further Food For Thought: Fears, Death & Helping Siblings

• Mixing fears with play on Halloween: how we do the same with scary feelings for children with CHD

• What sucks for a child with CHD: being open to grief and acknowledging losses

• Not forgetting the sibling experience: feelings in siblings impacted by CHD

• A dying child: helping a child approaching death

• Heart Parents Class 301: reflecting on your own story

Concluding Thoughts

In concluding this work over the past two years, I wish to reflect on a recent trip to the Netherlands. The "Netherlands", meaning "low lands", literally speaks to the reality that about a third of the country is below sea level. When visiting the Kinderdijk windmills, the tour guide from the area made it clear that the Dutch have had to become masters at managing water for their own survival. The windmills, for instance, have served as pumps to drain water from the soils for centuries. The "windmill-pumps" are taken care of by specially selected persons (millers) who also live within the home that surrounds the windmill itself. It is a dangerous, difficult and important job. We might think of the Dutch as having a kind of plumbing problem with nature--a problem that is a chronic condition of their circumstances. This strikes me as not too far off from what anyone with CHD must contend with--a plumbing problem in the body forever related to the structure and function of the "heart-pump". Both these pumps, windmills and the hearts of children with CHD, need special care. The millers are quite self-sufficient at solving problems, but have their neighboring millers for help, if needed. The child (or infant), on the other hand, is dependent on a team of medical professionals and parental care for help with their heart problems. The child is equally dependent on help with their heart worries and understanding their medical condition, which as an ongoing, evolving process, is not just one moment in time. Understanding the inner, emotional world of the child with CHD calls for the recognition of the child as having their own feelings and mind, not the façade of a "Heart Warrior". This body of work has intended to give voice to the child with CHD, as well as educate and help parents and others to be less alone in your journey. I hope that you have found these materials helpful and thought-provoking.

(above) The CHD medical team & the author. Drs. Damaris Wright, Pediatric Cardiologist; Hisashi Nikaidoh & Steven Leonard, Surgeons