Sometimes in life the things that may seem the most obvious come when we are not looking—that is Team Uncle Joe. Team Uncle Joe is truly an organic organization grown out of love and an immense response from patients and families. Everything that we have learned to do is through trial and error and direct feedback from those I unintentionally began serving.
Team Uncle Joe and the PATCH Network is filling a need in the congenital heart disease (CHD) community that we, as a patients, have experienced, or that we have begun to fill as patients and families have sought our help in understanding and navigating CHD. We focus our services around the individual patient providing patient-centered programs that help solve your problems with our experience and innovation. We are always looking for new ways to help our fellow patients and families and most of all we want you to know you are not alone in this journey.
Congenital Heart Defects (CHD) are structural anomalies in the heart present at birth.
Congenital Heart Disease (CHD) is the disease process caused by the defects.
Someone born with a congenital heart defect lives with the disease.
CHDs are the most common birth defects.
CHDs are the most common cause of infant death related to birth defects.
CHD occurs in nearly 1in100 live births.
Approximately 40,000 infants in the U.S. are born each year with CHDs.
Nearly 6,000 of those born each year will not make it to their 18th birthday.
2-3 Million Americans are alive with CHD.
1/4 of children born with CHD will need some form surgery or intervention to survive.
There is no cure.
Many adults with CHD will require heart valve replacements.
Many parents and family members of children with CHD suffer from psychiatric disorders including, depression, anxiety, and post-traumatic stress disorder (PTSD).
Adults with CHD have 3 to 4 times higher rates of Emergency Room visits, hospitalizations, and Intensive Care Unit (ICU) stays when compared to the general population.
Failure to thrive.
Eating issues with many requiring feeding tubes.
Neurocognitive issues such as executive function deficits, attention deficit and hyperactivity disorder (ADHD), and other learning disabilities.
Psychiatric disorders including, depression, anxiety, and post-traumatic stress disorder (PTSD).
Reduced gross or fine motor skills.
Migraine headaches usually associated with residual cardiac shunts.
Pulmonary issues, including restrictive lung disease from multiple open heart surgeries.
Exercise intolerance, shortness of breath, or angina on exertion.
Heart rhythm problems requiring medical management with medications, pacemakers, or cardiovert implantable devices (ICD).
Heart failure that can sometimes lead mechanical circulatory support or cardiac transplantation.
Sudden cardiac death.
Strokes and other blood clotting issues.