{"id":8514,"date":"2020-02-12T08:00:42","date_gmt":"2020-02-12T14:00:42","guid":{"rendered":"https:\/\/www.osfhealthcare.org\/blog\/?p=8514"},"modified":"2022-12-23T11:56:26","modified_gmt":"2022-12-23T17:56:26","slug":"born-with-a-heart-defect-the-right-provider-could-make-a-difference-as-an-adult","status":"publish","type":"post","link":"https:\/\/osf-blog.live.imagescape.com\/blog\/born-with-a-heart-defect-the-right-provider-could-make-a-difference-as-an-adult\/","title":{"rendered":"Born with a heart defect? The right provider could make a difference as an adult"},"content":{"rendered":"

Over countless scans, appointments and multiple open heart surgeries, Brock McCune has learned an important lesson.<\/p>\n

\u201cDo what the doctors tell you to do. They know best,\u201d Brock said.<\/p>\n

Born with a congenital heart defect<\/a>, Brock has depended on the care of specially trained physicians for his entire life.<\/p>\n

Shortly after he was born at OSF HealthCare St. Mary Medical Center<\/a> in Galesburg, a nurse noticed that he was turning blue. He was immediately transferred to OSF HealthCare Saint Francis Medical Center<\/a> in Peoria, where a pediatric cardiac surgeon performed open heart surgery when Brock was only a few hours old.<\/p>\n

He had a condition called transposition of the great arteries<\/a>. In a normal heart, the pulmonary valve carries blood from your heart to your lungs to receive oxygen, while the aorta carries that oxygen-rich blood to the rest of your body. In Brock\u2019s heart, these arteries were transposed, or switched, meaning the blood traveling to his body didn\u2019t carry enough oxygen.<\/p>\n

Transition to adulthood<\/h2>\n

Now 35 years old, Brock has had a pacemaker since he was 4 years old, as well as five open heart surgeries throughout his lifetime, most of the time seeing a pediatric cardiologist.<\/p>\n

In 2012, Brock\u2019s doctor referred him to see Dr. Marc Knepp<\/a>, who had just become one of the first physicians in the country to become board certified in adult congenital heart disease<\/a>.<\/p>\n

\"EKGThough he lives in East Moline, he usually sees a specialist in Peoria, rather than the clinic in Rock Island, because special equipment is used to check his pacemaker.\u00a0At an appointment last year, Brock told Dr. Knepp he\u2019s been feeling fine \u2013 no issues to report. Dr. Knepp performed his usual testing<\/a>: an EKG, pacemaker check and echocardiogram \u2013 all standard tests for someone with Brock\u2019s medical history \u2013 and found no signs of any issues.<\/p>\n

But after consulting the latest congenital heart defect guidelines put forth by the American Heart Association\/American College of Cardiology (AHA\/ACC) in 2018, Dr. Knepp ordered an additional scan.<\/p>\n

\u201cWe didn\u2019t see anything different on any of his testing, but we saw he was due for a CT scan or an MRI,\u201d Dr. Knepp said.<\/p>\n

That scan revealed a startling discovery. Brock had a large aneurysm<\/a>\u00a0above his pulmonary valve, pressed against the underside of his sternum.<\/p>\n

While the aneurysm produced no symptoms, it was like a ticking time bomb in Brock\u2019s chest.<\/p>\n

\u201cAn aneurysm like this could tear or leak and cause sudden death,\u201d Dr. Knepp said.<\/p>\n

Preparing for the procedure<\/h2>\n

Luckily, doctors discovered the aneurysm before any complications arose, and were able to treat it with a fairly simple procedure \u2013 a stent delivered via minimally invasive catheterization.<\/p>\n

While the procedure itself was straightforward, his medical team needed to be careful in how they approached the aneurysm to avoid any risk of rupture. The OSF Innovation team<\/a> replicated the pulmonary valve and aneurysm in a 3D modeling system \u2013 which Brock got to see through virtual reality<\/a> goggles before his procedure.<\/p>\n

\"Cardiologist<\/p>\n

\u201cThere was a square that you could zoom in and zoom out, and take slices away,\u201d Brock said. \u201cActually visualizing it made it easier to understand.\u201d<\/p>\n

Doctors were also able to turn the virtual model into a life-size, 3D printed model<\/a>, so Dr. Priti Patel<\/a>, who placed the stent, could be sure of the exact size and placement needed during the procedure.<\/p>\n

This collaboration between specialists is part of what makes the Congenital Heart Center<\/a> at OSF HealthCare Children\u2019s Hospital of Illinois<\/a> unique. And now that more people born with heart defects are surviving to adulthood, having three cardiologists board certified in adult congenital heart makes the team<\/a> uniquely qualified to consult on the care for people like Brock.<\/p>\n

\u201cWith the additional adult congenital heart training and board certification, more pediatric cardiologists are comfortable transitioning their patients to the ACHD cardiology team,\u201d Dr. Knepp said.<\/p>\n

\u201cAdditionally, working with local cardiologists and primary care doctors, we are able to provide high-quality, evidence-based care to patients like Brock. We don\u2019t replace their existing doctors \u2013 we add another level of expertise.\u201d<\/p>\n","protected":false},"excerpt":{"rendered":"

Brock McCune has had countless scans and appointments. But an adult congenital heart specialist caught something others might have missed.<\/p>\n","protected":false},"author":60,"featured_media":8581,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_lmt_disableupdate":"no","_lmt_disable":"no","footnotes":""},"categories":[105,223],"tags":[700,142,372,627],"coauthors":[757],"class_list":["post-8514","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-cardiovascular","category-patient-story","tag-congenital-heart","tag-childrens-hospital-of-illinois","tag-osf-saint-francis","tag-osf-st-mary"],"yoast_head":"\nCongenital heart defect? Your provider matters | OSF HealthCare<\/title>\n<meta name=\"description\" content=\"Brock McCune has had countless scans and appointments. 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