Trace Knight was born March 26, 2009. Shortly after his birth something was wrong. His nurse initiated additional tests which ultimately resulted in saving his life. From there Trace, and his father, were immediately transferred from Anne Arundel Medical Center to Children’s National Medical Center in Washington DC having to leave his Mother and twin sister behind. Upon Trace’s arrival to Children’s he was received by a team of amazing doctors, nurses, cardiologists and surgeons who became an extension of his family. After three days of tests Trace was diagnosed with Shone’s Complex, a rare Congential Heart Disease (CHD).

The overall prognosis of Shone’s Complex is poor, but Trace and his family focused on fighting through the challenges and living the best life possible. Over the course of 38 months Trace endured and fought through four open heart surgeries including aortic and mitral valve replacement, implantation of a pace maker, seven catheter procedures and never learning how to eat without the support of his feeding tube. A total of 14 surgeries and procedures, hundred’s of needles, several bouts of upper respiratory infections where Trace’s mom would hold him in a standing position for days to help him breath and a daily routine of medications and feedings which started at 5am and ended at 10:30pm.

Trace was larger than life. You would never have known he had been through so much. He hid it so well never complaining or slowing down. He was special and enjoyed life. A real life superhero leaving all that knew him with a lifetime of memories and the heartbeat which keeps Team Trace going. A majority of funding and research is focused on adult therapies. Team Trace is focused on beginning of life awareness, community support and research projects to improve outcomes for our little superhero’s in their fight against CHD.

Improve outcomes for children with CHD by raising awareness, supporting and developing community outreach programs, and funding CHD research.

Congenital heart disease (CHD) is the form of heart disease that a person is born with. The affects of any form of heart disease can be deadly, but for the person with congenital defects making lifestyle change such as diet and exercise will not prevent or reverse the effects of their form of this disease. Getting diagnosed early in life is the best defense against this kind of heart condition.

CHD is an actual defect of the heart or large blood vessels that connect to the heart. This type of defect is something that people are born with. Other forms of heart disease form over time, and in most cases are caused by unhealthy diets and sedentary lifestyles. Most people are diagnosed with a congenital heart defect a week or two after they are born. Considering it is one of the most common birth defects all doctors are trained to recognize the signs and symptoms that a new born infant will present if they have this type of defect.

1 out of every 100 newborns are born with CHD. For the unborn baby this type of defect is not life threatening because they are still using their mother’s cardiovascular system, through their attachment to the placenta, to pump blood and nutrients through their own circulatory system. Their heart is beating and there are times that a defect can be seen with an ultrasound but the majority of defects remain undiagnosed until after the baby is born and their own heart takes over.

There have been many advancements in the treatment of CHD enabling those newborns with complex cases to have greater survival rates, but more is needed specifically for Pediatric CHD in order to improve outcomes.