Katarina Anja or as we affectionately call her “Katja” was born with a rare CHD called “Truncus Arteriosus” (TA). This means that Katja was born with only one artery into her heart. In a normal heart you have both a pulmonary and aortic artery to your heart. The right side of the heart pumps oxygen-poor blood through the pulmonary artery to the lungs. The left side of the heart pumps oxygen-rich blood through the aorta to the rest of the body. In babies with TA, oxygen-poor blood and oxygen-rich blood are mixed together (the red and blue blood shown as purple in the photo below). This causes too much blood to the lungs and the heart works harder to pump blood to the rest of the body. This causes TA babies to sometimes be “cyanosis” or blue tinted. They also have a large hole or VSD in the heart.

There are different types of TA (1-4). Katja is Type 1. CHD occurs in 1 in 100 infants born every year of those only 1% will have TA. It’s very rare and immediate surgical intervention is needed to repair the heart. We found out at our 20 week pregnancy anatomy scan that Katja had TA. We were extremely fortunate to have the ability to prepare for her arrival. Many TA families don’t learn about a CHD until after birth.

Katja was born on July 22nd 2015 at 8:38am(38w4d) in Evergreen, Illinois. She weighed 6lbs 5oz. Like most TA babies she was stable at birth. Her sisters, aunts and grandparents were able to come see her at the hospital. She was in the NICU for 12hrs before being transported to Lurie Children’s Hospital in Chicago. At Lurie she was placed in the CICU (Cardiac intensive care unit).

Katja had her first OHS (open heart surgery) on July 28th which was her big sister’s 8th birthday! She was 6 days old.