Down syndrome is and continues to be the most common chromosomal disorder in America. It is a genetic condition and is caused by a partial or full third copy of chromosome 21. Approximately 1 in 700 babies are born with Down syndrome. Of those born with Down syndrome, roughly 50% of them also have congenital heart disease (CHD).
The most common CHDs in those with Down syndrome are:
A diagnosis of either Down syndrome or CHD can be a shock for new parents. Thankfully, advancements in the last 60 years have drastically increased the survival rates of those with Down syndrome and CHD occurring together. However, Down syndrome in itself is nothing to be afraid of according to many parents who have firsthand experience with the diagnosis. We asked two moms that are living with the reality of CHD and Down syndrome what their thoughts were on DS and CHD. Elizabeth Burgess, heart momma to Addie, and Faithe Logan, heart momma to Dawn, are both strong advocates in the Down syndrome and CHD communities.
“We consider ourselves lucky to be blessed with a child who has Down syndrome. CHD is the thing that keeps us up at night, not Down syndrome,“ said Elizabeth. “When asked if I could change [Dawn], take away the Down syndrome, I simply have to say NO! That is what makes her who she is today. I don’t know who she would be if she didn’t have that extra little chromosome. What I would change, without a doubt, is her heart health! With a healthy heart, nothing can stop her!” said Faithe.
“Looking into [Dawn’s] future, I know that there will be more cardiac procedures and surgeries which means more uncertainty in our lives. With research and progress in the cardiac field those procedures and surgeries will become progressively more simple, successful, easier to recover from and more survivable due to donations from caring individuals,” said Faithe.
CHD is the diagnosis that often brings physical suffering and pain, not Down syndrome. More research is needed to find better and more permanent treatment options for CHD. Currently, there is no cure. We at Project Heart are going to change that. We’re going to build a heart in 20 years that uses a patient’s own cells. We hope you will join us in our journey.
Want to be an active member in the Down syndrome and CHD community? Come see us on November 2nd, 2019 at the Nashville Buddy Walk!