Connor Joseph Tolle | Heart Warrior of the Week
Cassy found out her baby boy would be born with two congenital heart defects at 26 weeks pregnant – truncus arteriosus type 2 and ventricular septal defect (VSD). Connor Joseph Tolle was born on June 12th, 2017 and through the grace of God and an undying will to never give up, is now a happy 9-month old. But he had to overcome some major obstacles to get where he’s at now.
At the fragile age of just two days old, this brave little boy underwent open-heart surgery to correct his defective truncal valve, place a conduit, and patch his VSD. Connor spent about 5 weeks at Children’s Hospital of Philadelphia (CHOP) recovering from this surgery. When he was released, he was on several medications, including captopril (for heart function/blood pressure), digoxin (for the supra ventricular tachycardia), vitamin D and Lasix; all of which were taken twice a day. Like the warrior he is, he was able to be removed from some of these medications and now only takes the captopril and digoxin.
While his Mom is hopeful for a future with few restrictions in which her son can live a full and happy life, there are some uncertainties for her baby boy as he grows and gets older. He will not be allowed to play contact sports, but they are unsure of his full list of limitations until it comes time to cross that bridge.
Thankfully, he is not scheduled to undergo any more procedures at this time. However, there is a strong possibility he will need more surgical intervention down the road – likely some heart caths to assess the function of his heart and potentially another open-heart surgery should his condition worsen.
Like just about every Heart Parent out there, Cassy has every day worries. “I think everything and every day is a worry, we always have to have our guard up for his safety and health. I always worry about him not breathing at night, and I often think he's blueish but I have a hard time deciphering if he is or if it’s just the stress of CHD playing tricks on my mind,” says Cassy.
Connor is her angel on Earth, she describes him as a pure soul who has beat the odds stacked against him since day one. It is hard for her to imagine how someone so little and precious can go through something as traumatic as open-heart surgery, yet come out of it on top, living and smiling like it never happened.
Cassy adds, “I'm only 23 years old, I was 22 when he was diagnosed. Before him, I had no idea about CHD. Then to learn my oldest son also has one – bicuspid aortic valve – was a shock that I wasn’t prepared for. I'm so thankful to have Connor, he makes me a better person every day. I will forever be thankful to Dr. Mascio for saving my son’s life. Having a child that you could lose at any moment makes you really treasure each and every day.”
About Connor’s Defects
When one large artery, instead of two separate ones, carries blood to the lungs and body.
Characterized by origin of a single pulmonary trunk from the left lateral aspect of the common trunk, with branching of the left and right pulmonary arteries from the pulmonary trunk.
Characterized by separate but proximate origins of the left and right pulmonary arterial branches from the posterolateral aspect of the common arterial trunk.
The branch pulmonary arteries originate independently from the common arterial trunk or aortic arch, most often from the left and right lateral aspects of the trunk. This occasionally occurs with origin of one pulmonary artery from the underside of the aortic arch, usually from a ductus arteriosus.
With truncus arteriosus, the blood leaving the heart does not follow a normal path. It only has one vessel, instead of two separate ones, for the lungs and body. With only one artery, there is no specific path for blood to travel to the lungs for oxygen before returning to the heart to deliver that oxygen to the body.
Ventricular Septal Defect
This defect occurs when the heart’s inner wall (septum) that separates the left ventricle from the right ventricle has a hole or multiple holes in it. The hole(s) allow oxygen-rich blood from the left ventricle to mix with oxygen-poor blood from the right ventricle, resulting in a lack of oxygen circulating throughout the body.