A Parent's Perspective
Published on in CHOP News
Published on in CHOP News
By Elise, mom of a cardiac patient
This Feb., I attended the Cardiology 2020 conference as a “roving reporter.” During the conference, I had the opportunity to attend sessions alongside CHOP cardiologists, nurses and other staff members. It was fascinating to hear about pediatric cardiology from the perspective of health care practitioners, and as a parent, much of the information was very helpful.
Here are my top eleven conferences takeaways:
11. Advocacy begins at birth. Parent and congenital heart disease (CHD) advocate Jennifer Page spoke about feeling like an unqualified mother when her son, Max, was first born. However, Jennifer quickly learned that she needed to educate herself and advocate for Max’s care. She recommends bringing your child into discussions around health and wellness at an early age, so that they can be a part of any decision-making and can learn to one day advocate for themselves.
10. Exercise is important. Pediatric heart disease effects the whole body, and doctors should treat the whole person. Exercise helps make the heart stronger, and it’s one way that your child can take care of their whole body. Talk to your cardiologist about the benefits of sports or other types of exercise for your child.
9. Technology is constantly evolving. Doctors are using virtual reality, artificial intelligence and 3D printing to better understand an individual patient’s anatomy, to simulate real-life situations and to determine the best plan of action for patients. This translates into more personalized care and more precise treatments for our children.
8. Medicine is advancing. Scientists, researchers and clinicians are making advances in surgical procedures and catheter therapies. For example, surgeons are using stem cells and cell-based tissue engineered to strengthen young hearts.
7. Research studies are critical. Scientists need more data, so they can recognize trends, collaborate on best practices and predict outcomes. It is very important for families to participate in research studies in order for the field to continue to advance!
6. Parents suffer when their kids suffer. Parental stress is a topic that’s been talked about for years but is only now gaining traction in research. Studies have shown that over half of mothers and a third of fathers whose children are in the Cardiac Intensive Care Unit (CICU) meet the criteria for clinical depression. Effective management of stress and anxiety in parents is now being considered an indicator of patient success.
5. Self-care is critical. The mental health of young adult patients is linked to long-term outcomes. Children need to be taught resilience at a young age, and they need to be shown how to take care of their emotional health. Families should integrate healthy coping strategies, like exercise, eating a balanced diet and practicing meditation.
4. There are 1.5 million adults living with CHD. These patients need specialized care — often the transition from pediatric cardiology to adult cardiology is difficult. One study showed that young adults prefer to start the discussion about adult congenital heart care as early as 10 to 12 years old. Starting these conversations early may help ease your child’s eventual transition to adult care.
3. Collaboration is key. Much is happening behind the scenes that we, as parents, can’t see. In addition to conducting research studies, teams of nurses, cardiologists and surgeons are collaborating more than ever, working to support each other so that they can better help our kids.
2. Empathy can be learned. Practitioners are learning the importance of good communication and practicing these skills among their teams and when speaking with parents. We all know that difficult conversations stay with us forever, and it is crucial for doctors to show empathy and compassion when discussing our kids’ care.
1. It’s all for our kids. While some of the conference lectures were very technical and scientific, it was comforting to know that our doctors are continually educating themselves, learning from each other and dedicating their careers to helping our kids.
Ultimately, I left Cardiology 2020 feeling inspired and hopeful. While the field of cardiology has come far, there is still work to be done, and it was uplifting to see that there are incredible scientists and clinicians out there doing it. I do believe the future is bright for our children.