{"id":5720,"date":"2019-02-19T11:15:16","date_gmt":"2019-02-19T17:15:16","guid":{"rendered":"https:\/\/www.osfhealthcare.org\/blog\/?p=5720"},"modified":"2019-06-24T10:20:07","modified_gmt":"2019-06-24T15:20:07","slug":"half-a-heart-kid-thriving-today-due-to-congenital-heart-center-specialists","status":"publish","type":"post","link":"https:\/\/osf-blog.live.imagescape.com\/blog\/half-a-heart-kid-thriving-today-due-to-congenital-heart-center-specialists\/","title":{"rendered":"\u2018Half a heart kid\u2019 thriving today due to Congenital Heart Center specialists"},"content":{"rendered":"

At the age of 7, Pete McNear has spent more than his share of time inside of a hospital.<\/p>\n

Pete was born with tricuspid atresia<\/a>\/hypoplastic right heart syndrome, a complex congenital heart defect most easily described as having half a heart. A patient at the Congenital Heart Center<\/a> at OSF HealthCare Children\u2019s Hospital of Illinois<\/a>, Pete has undergone three heart surgeries and two cardiac catheter procedures \u2013 all before the age of 3\u00bd.<\/p>\n

Identifying an issue<\/h2>\n

Danielle McNear was 16 weeks pregnant when she was sent to a specialist after a prenatal ultrasound detected a heart defect in the baby.<\/p>\n

\u201cThey didn\u2019t know what the defect may have been at that point,\u201d Danielle said.<\/p>\n

At 19 weeks, Danielle saw specialists<\/a> at the Congenital Heart Center where they determined the baby had tricuspid atresia (TA)\/hypoplastic right heart syndrome (HRHS).<\/p>\n

The diagnosis means the right ventricle of the baby\u2019s heart is either too small or absent, restricting blood flow to the body and with it a lack of oxygen. Tricuspid atresia (TA) is the most common heart problem present in babies with HRHS, however TA in and of itself is not so common. Only 1 in 10,000 babies born have TA, which is when the tricuspid valve, located between the atrium and the ventricle of the right side of the heart, doesn\u2019t develop properly, restricting blood from flowing normally.<\/p>\n

He was further diagnosed with ventricular septal defect\u00a0<\/a>(VSD) and atrial septal defect<\/a> (ASD). VSD is when there is a hole or opening in the septum, which is the dividing wall between the right and left ventricles. ASD is an abnormal hole in the wall between the two upper chambers of the heart \u2013 the right and left atria.<\/p>\n

\u201cThey said as long as I was able to carry him, he\u2019d be OK, but we wouldn\u2019t know much else until he was born,\u201d Danielle said.<\/p>\n

Making an arrival<\/h2>\n

With a room full of doctors and nurses, Pete was born at OSF HealthCare Saint Francis Medical Center<\/a> on January 31, 2011, and was whisked away to the neonatal intensive care unit (NICU) at OSF Children\u2019s Hospital<\/a>.<\/p>\n

In the NICU, Pete was monitored for seven days before undergoing a balloon procedure to allow for better blood flow to the rest of the body.<\/p>\n

At 8 days old, Pete went home with Danielle and his dad, Joe, to their Lacon home.<\/p>\n

The surgeries<\/h2>\n

\"Children's\u201cThe right side of his heart has no function,\u201d Danielle said. \u201cHe\u2019s your half a heart kid.\u201d<\/p>\n

Having TA\/HRHS requires at least three surgeries from infancy up to around age 4 to improve blood flow to the body.<\/p>\n

Pete \u2013 or PBJ (Peter Bryan James) as he\u2019s known at the Congenital Heart Center \u2013 had his first surgery at 6 weeks old. This surgery<\/a> consisted of inserting a shunt \u2013 or an artificial tube \u2013 to provide blood flow to the lungs.<\/p>\n

\u201cIt\u2019s all about getting oxygen-rich blood to the lungs and the rest of the body,\u201d Danielle said. \u201cHe did well following that surgery.\u201d<\/p>\n

A second surgery at 6 months old created a direct connection between the pulmonary artery and the vessel that returns oxygen-poor blood from the upper part of the body to the heart. It reduces the amount of blood flow from returning to the small right side of the heart and directs it to the lungs.<\/p>\n

Eight days in the hospital and Pete was back at home.<\/p>\n

\u201cHe was still blue in color \u2013 which is typical of a congenital heart kid with his defect at that point,\u201d Danielle said.<\/p>\n

Despite his condition, Pete thrived and the family went on with their normal lives \u2013 which now meant regular doctor visits, lab work and monitoring.<\/p>\n

When he was 3\u00bd, Pete had the third in the series of surgeries to improve the blood flow in his body. The procedure creates a connection that allows blood coming back from the lower body to go to the lungs. This means oxygen-rich and oxygen-poor blood no longer mix in the heart.<\/p>\n

Following the surgery and 10-day hospital stay, Joe remarked, \u201che actually had color \u2013 he wasn\u2019t blue.\u201d<\/p>\n

Even Pete recognized the change, Danielle said.<\/p>\n

\u201cAfter surgery was the first time we saw him pink,\u201d she said. \u201cA few days after we were home, Pete noticed his hands weren\u2019t purple, and he said, \u2018The doctors did that to me.\u2019\u201d<\/p>\n

Care close to home<\/h2>\n

\"OSFReceiving care at the Congenital Heart Center<\/a> is similar to being embraced by family, the McNears said.<\/p>\n

\u201cWhen we\u2019re here for surgeries, it\u2019s nice because we can stay here,\u201d Danielle said. \u201cThe nurses and physicians become your friends and family \u2013 you are giving them your child\u2019s life.\u201d<\/p>\n

Since Pete\u2019s diagnosis, Danielle and Joe have become involved with The Organization for Understanding Congenital Hearts (TOUCH)<\/a>. The group provides emotional support for the entire family and brings together parents of kids with congenital heart defects who have common concerns, feelings and anxieties.<\/p>\n

\u201cWe are there to help parents and bridge the gap,\u201d Danielle said.<\/p>\n

An active boy<\/h2>\n

Today, Pete has no restrictions. He has regular checkups with his cardiologist, Dr. Priti Patel<\/a>, at the Congenital Heart Center.<\/p>\n

\u201cHe\u2019s doing well,\u201d Danielle said. \u201cOne of the things with heart defects, our kids look very normal, yet there\u2019s something very serious going on inside.\u201d<\/p>\n

Pete plays baseball \u2013 he likes hitting and playing catcher and the outfield. He tried soccer, but it was a bit too much, Danielle said.<\/p>\n

\u201cAlthough his heart is \u2018mended\u2019 he will require lifelong care and monitoring,\u201d Danielle said. \u201cHaving a congenital heart defect brings many challenges and Pete amazes me each and every day.\u201d<\/p>\n

In the future, Pete may require a pacemaker or possibly a heart transplant when he\u2019s an adult.<\/p>\n

\u201cYou just don\u2019t know,\u201d Danielle said. \u201cThere\u2019s nothing at the end of the day to give him a whole heart. We are glad he is doing as well as he is.\u201d<\/p>\n","protected":false},"excerpt":{"rendered":"

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