The Heart and Mind Education Day began with a series of lectures in the morning, followed by breakout sessions in the afternoon. The breakout sessions covered a variety of topics including: What’s new in CHD research and why we should get involved; The impact of therapy on neurodevelopment; Pre and post-operative experience of the child with CHD; Single ventricle survivorship program; Tetralogy of Fallot; CHD and neurodevelopment; Transitional care for adolescents and young adults; and, Transitional care for adults and parents.
Dr. Gil Wernovsky, Associate Chief of Pediatric Cardiology discussed Cardiac Myopia, the concept that doctors treat Congenital Heart Defects as episodes with a holistic approach. They are no longer looking at the child solely as a cardiac patient, but rather as a whole patient. He discussed how CHDs are a multi-system disease and therefore non-cardiac issues are equally, or more important, to cardiac issues. As a result, cardiologists are no longer focusing on the heart alone and leaving seemingly unrelated areas to other specialists. Instead, they are proactively looking for problems that they know may arise and staying involved.
CHOP is also looking at brain development and potential long-term consequences of congenital heart defects. CHOP’s newly formed Neurocardiac Care program brings together the expertise of cardiologists, neurologists, developmental pediatricians, physical, occupational and speech therapists, nutritionists, nurses and other professionals as needed. They screen infants and children who may be at risk in any or all of these specialty areas. As CHD patients mature, CHOP is striving to better understand the long-term risks and create long-term treatment plans in order to create an improved quality of life for our children.
Dr. Wernovsky also discussed how CHOP is working to standardize protocols for post-Fontan patients. Currently, there are treatment plans for the first few years of life post-Fontan, but no written protocol to assist patients and parents to plan long-term. The development of protocols for the post-Fontaner will teach patients/parents how to care for themselves and their children’s medical needs far into the future. At this time, most pediatric cardiologists across the country are caring for adult patients. CHOP hopes to transition this patient group to adult cardiologists – a process that will take significant time and planning to ensure consistency in care for CHD patients.
We also learned how to get your child ready to take charge of their own medical care. We discussed different techniques of storing your child’s medical history. My interest peaked at the discussion of a one-page medical sheet, maintained and taken to all medical appointments and/or ER visits. An idea so simple, yet nearly 90% of the participants at the conference (including myself) admitted to not having this handy tool. To download the form in order for you to begin a medical information sheet, click here. Another tool shared was the idea of a medical binder, to store your all of your child’s medical information (including, most importantly, all operative reports). The importance of this binder comes into play, particularly when your child is in need of hospital services from a facility not familiar with your child or his/her specific cardiac needs. Remember, even though we all have HLHS children, each HLHSer is different and has their own special set of circumstances (i.e. feeding issues, pacemaker, stent placement, narrowed pulmonary arteries, etc.)
Each of us can create a “care binder”. If you are a CHD patient, you can download the pages here. Parents of CHDers, download the pages here. Participants mentioned placing entire medical histories and records on thumb drives. Google searches, such as “medical alert jewelry” can lead you to many websites with a variety of options.
With my HLHSer, Jacob, being discharged from CHOP the day of the conference, I could only attend one of the breakout sessions offered. I, of course, chose to attend the Single Ventricle Survivorship Program (SVSP) session. The SVSP program was created as a proactive approach for the long-term quality of life for single ventricle children. At age 5, children are eligible for enrollment. The SVSP’s goal is focused on the challenges faced by single vent patients and to improve the quality and duration of life. The program provides screening and evaluation by a team of experts including cardiologists, gastroenterologists, endocrinologists, hepatologists, hematologists, nurses and more.
To learn more about CHOP’s Single Ventricle Survivorship program, click here.
This year, the conference was offered only to those able to travel to Philadelphia, however, there is discussion of expanding CHOP’s Heart and Mind Education Day to be available to families nationwide - perhaps via Webinar or some other similar modality.
Below are links to a series of videos regarding CHOP’s Heart and Mind Education Day and links to information provided during the conference. I applaud the Children’s Hospital of Philadelphia for providing an education day for parents and patients – to help families stay involved, to meet and to share stories of hope.
Video Links:
Meet Gil Wernovsky, MD, a Pediatric Cardiologist and Cardiac Intensivist at The Cardiac Center
Jeannie Carroll, RN, BSN, on Heart & Mind Education Day
2011 Heart and Mind Education Program:
http://www.chop.edu/export/download/pdfs/articles/cardiac/heart-mind-program.pdf
Link to CHOP's page:
http://www.chop.edu/service/cardiac-center/resources-families/heart-mind-education-day.html
A huge thank you to the Children’s Hospital of Philadelphia, not only for providing continued education to parents and patients, but in their constant quest to maintain the highest of standards for our children.
Thank you for posting all this information. My son (LVNC DCM) is seen as an outpatient there, and fortunately we had just been discharged from the CCU two weeks prior so we missed the event.
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