CHD Symposium Highlights and Insights
This summer, I was invited as a guest for the Congenital Heart Defect (CHD) Symposium put on by Mended Little Hearts and Mended Hearts in Milwaukee, Wisconsin. It was a fantastic way to connect with the heart community through other families, professionals, and had actionable ways both to give back and learn about important advances and related topics for the field. It was a wonderful conference that impacted me both personally and professionally.
The first day was a CHD Leaders’ Summit. There was a talk on Communicating in a Supportive Role; it really spoke to me as a heart parent trying to be there for others in their heart journey, but also as an attorney so I wanted to share a few tips from the talk:
When communicating with others, we need to be aware of the difference between sympathy and empathy. Empathy is a choice and requires putting yourself in another person’s shoes to truly understand them and feel with them (not just feel for them). If we are guiding someone through a process, whether it’s navigating a difficult medical journey or figuring out a plan, being empathetic can make things much more significant. Utilizing your own experiences to demonstrate that you “get it” and are in a unique position to serve someone is a responsibility, but also an honor that develops trust and forges strong relationships.
As a mom, I understand why people would want to get their planning completed and the types of concerns and fears they have. As a heart mom, I understand the anxiety and issues that come with caring for a child who has medical issues.
Listening to others is one of the most powerful ways that we can help them, understand them, and really hear what they are going through. There are different levels of listening, which are indicated by factors like the amount of attention and the purpose you are attributing to the conversation. The goal is to actively listen to others. For many, having others truly listen to their story allows them to relieve stress, anxiety, and create deep relationships.
When we are talking to others, it is essential that we be aware both of what we are saying and what we are not saying. It is easy to say things we don’t mean or say things in a manner that is less than ideal. By applying the THINK principles, we can be sure that we are getting the point across in a way that allows us to meet others where they are at with the information that would be most helpful. If we are guiding someone through a stressful or overwhelming issue, these principles really allow us to appropriately respond to their needs.
During the leadership conference, we also had a session on “Telling Your Story.” Being able to share stories is a meaningful way to open up to others, spread awareness, and educate on different topics, causes, or events. The non-profit that led the session, Ex Fabula, said that a story can have a question that you’re going to answer, include actions AND emotion, and the purpose is to create dialogue.
I was asked to share my story of being a heart mom in front of the group. It was special to tell others just a piece of my journey. Several heart parents and I were able to have a good discussion afterwards. One of them is a fellow lawyer mom from Alabama. CHDs affect so many people as the most frequently occurring birth defect. CHDs affect all kinds of families and parents and I met parents who are in the medical field, consultants, other lawyers, professionals who work in the tech industry, and many other fields.
The second day of the symposium was focused on CHD issues, including advances in the field/technology and great tips to understand as heart warriors grow up. It was a good reminder that for any field we are interested in, it’s important to stay educated about any changes, be connected with professionals, and keep the passion. We need to share information, education, build community, and advocate. I won’t specifically mention the different advances since I don’t want to get any of the technical details wrong. Nonetheless, it is very exciting to see that practitioners are continually looking for ways to move the field forward with regards to patient care and long term outcomes. Also, look out for a children’s book called “Hank the Heart” this fall, by folks from Cincinnati Children’s Hospital…it will be really special!
I loved hearing about new innovations with surgical techniques, non-surgical intervention, virtual reality, and how things like social media and technology impact the dissemination of information. It also was good to hear insights of how medical teams collaborate, much like how attorneys and other professionals should collaborate to advance the field.
One interesting piece was that a nurse practitioner, Adrienne Garo, talked about things CHD patients entering adulthood must consider. Since CHDs are lifelong conditions, this requires someone with CHD to be monitored by a medical team, be aware of their medical situation, and be empowered in their care. She specifically mentioned the importance of all adult CHD patients (and all adults in general!) getting their advance health care directives executed. These are an essential piece of any good Estate Plan as they let medical teams know your agent is and what your wishes are. She mentioned also the prudence of having health care directives connected to your electronic medical records so that the medical team has easy access if it’s needed. Adrienne felt that it is also good for nominated health care agents to be aware that they are not making the decision for you, but they are following the decisions that you’ve already made.
It is worth noting that though the field of pediatric cardiology has made great progress, there is still so far to go. There are still too many babies and children who pass away due to complications from their CHD. CHDs still have no cure and we don’t know what causes most of them. Though we can repair many CHDs, heart warriors often still need additional intervention (beyond routine cardiology check-ups), which can include catheterizations, open heart surgery, or transplants. So while we are blessed that medicine has advanced a lot, we still need to work to move it forward even more.
I feel so blessed to have attended this symposium and it really reinforced some of the ways I want to continue to help others as an advocate in the CHD community and as an Estate Planning attorney.
PS If you have a loved one with a CHD or know someone in this journey, please feel free to connect them with me. I also am open to talking about the technical things I learned at the conference. Also, here is my blog about my son’s heart journey, which can be shared if that will be helpful to someone.