We Had No Idea
There are some things you never know anything about until they become the only things you can think about.
Up until June 12, 2017, we had no idea that:
- Congenital Heart Disease (CHD) is the #1 birth defect and approximately 1 in 100 babies are born with CHD.
- CHD kills 2x more children each year than all forms of childhood cancer combined.
- 1 in every 10 children diagnosed with CHD does not live into adulthood.
On June 12, 2017, twenty weeks into pregnancy, we found our son Gus, has a Congenital Heart Disease. Everything in our world changed.
Gus has Transposition of the Great Arteries (TGA). His aorta and pulmonary artery didn’t switch in development. He wound up with uncrossed lines of circulation, red blood from the lungs back to the lungs, blue blood from the body back to the body. Oxygen wouldn’t be going where it’s supposed to go.
His CHD was detected early and we were able to get his initial medical and surgical plan in place and start to wrap our heads around what this will mean for the rest of our lives. CHD is a lifelong condition; surgery is not a cure.
Gus was born on October 23, 2017. On October 24, 2017, his second day of life, due to unforseen and extreme pulmonary hypertension, he had an earlier than planned surgery to switch his arteries. He spent the next three weeks in intensive care waiting for his pressures to stabilize.
Though the initial repair was successful, Gus will have to have a second surgery to manage increasing pressure from a narrowing of tissue at one of the repair sites. He has monthly echocardiograms to monitor the pressure.
Thanks to advances in care, for the first time, there are more adults living with CHD than children, but research for CHD is vastly underfunded. Despite its prevalence, it’s viewed as a hidden disease and often escapes public awareness.
So what do you do when you feel like you can’t do anything?
You advocate. You help raise funds. You join in support.
We’re asking you to join us in the fight against Congenital Heart Disease as we participate on “Team Gus” in the Congenital Heart Walk, October 14, 2018 in New York City.
You can walk with us, join our fundraising team, make a donation or just spread the word about the impact of CHD. All funds raised by our team will benefit The Children Heart Foundation and the Adult Congenital Heart Association.
Thank you for taking the time to read about Gus and we look forward to seeing you on October 14th!
When: Sunday, October 14, 2018
Where: Riverbank State Park, 679 Riverside Drive, New York, NY 10031
Time: Registration opens - 9:00am; walk kicks off - 10:00am
What: 1 mile family friendly walk next to the beautiful Hudson river!
Matt, Michelle, Ruby and Gus!
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