As a parent, when you are told that you are having or just had a baby with a congenital heart disease, you may feel as though your entire world is spinning out of control. You may be in the dark as to what this diagnosis implies, what prospects for a long and healthy life your child can expect, and what their day-to-day lives would be like. There may be plenty of informational resources for you to find online, some with more accurate information than others, and you may end up with more questions than before you began your search. What you might not have thought about is the possibility of receiving help and guidance through the resources offered by a non-profit organization dedicated to children with these issues, such as the Non-Profit Eleanor Grace Memorial Foundation. Let’s see what these organizations have in store that can help you with this frightening diagnosis.
Mission of a Non-Profit for Children with Congenital Heart Disease (CHD)
There are several non-profit organizations focused on helping children who have been diagnosed with congenital heart disease and their caretakers. Their main mission is to further the prevention and treatment of these diseases through funding the most promising research projects.
Because of these efforts, children diagnosed with CHD can experience a full life, having the possibility of surgical procedures or other treatments that bring them hope and a light for their future.
Their ultimate hope is to reach a point in which every baby who is found to have CHD will have the opportunity to live a long and healthy life and, eventually, to see CHD eradicated. Many supporters and volunteers are working towards this end.
Thanks to the efforts of these non-profits, the rates of longevity and the quality of life of these children have improved dramatically. Because of this non-profit-funded research, these children can expect to live longer than possible two short decades ago.
Some Facts About Congenital Heart Diseases
CHDs are issues present at birth affecting the function and structure of the heart. They are the most common congenital disability in the United States today, impacting the lives of about 400,000 babies every year.
With the help of a fetal echocardiogram, these diseases can many times be diagnosed while the baby is still in their mother’s womb. Other CHDs are not found during pregnancy or at birth but only come to light as the child grows.
Thanks to the advances in medical treatment and care, children with CHD can live longer and healthier lives. Yet, these individuals must always be under medical supervision because the condition is not cured even when the issue with the heart has been surgically repaired. Depending on the severity of the heart defect and the number of heart defects they have, they may develop a variety of problems over time. That is why it is essential for them to always be under a specialist’s care and to follow all of their doctor’s instructions.
What Health Effects Are Related to CHD?
The effects of a CHD depend on the severity and type of the heart defect. Some children diagnosed at birth may have rapid breathing, fatigue, or poor blood circulation. Others may have a greater risk of developing other medical issues.
CHDs range from complex to simpler conditions. Some more complex defects, such as hypoplastic left heart syndrome or Tetralogy of Fallot, may be associated with different syndromes or affect other organ systems. These can include gastrointestinal or renal issues, among others. However, simpler defects, like ventricular septal defects, are more isolated and may have few additional health effects.
