Killian, born 2009

Killian was born on November 23, 2009 via scheduled C-section. Immediately after delivery we were told they were bringing him to the NICU because he was not turning pink. We were scared but the doctors reassured us that it was most likely fluid in his lungs. A few hours later we were told our baby had transposition of the great arteries and ventricular septal defect. He was going to be transferred to Children’s Hospital in Philadelphia as soon as possible. We had no idea what TGA was; the doctors did their best to educate us quickly but we were in too much shock to process any of the information they were giving us.

 

Killian was transferred to CHOP and my husband went with him, since I was unable to leave the hospital. At two days old Killian had a balloon septostomy. After this procedure we learned he also had pulmonary stenosis. After two weeks in the CICU, Killian was doing so well they decided to let him go home so he could grow before they did the repair. It was great to bring our baby home and meet his big brother, but it seemed like we were always waiting for something to happen. Anytime Killian cried he would turn blue and we had to keep him away from people to avoid him getting sick.

 

At two months old Killian was ready for his repair. Since he had the pulmonary stenosis, a regular switch procedure would not work. The doctors decided on the Nikaidoh procedure, which uses donor tissue to replace the unusable valve. Killian did great in surgery and recovered so fast they were ready to send him home after only three days. However, he ended up catching RSV and had to stay in the hospital for a week.

 

Since his surgery, Killian is doing great. He is small on the growth charts but is hitting all of his milestones. Killian will require two more surgeries as he grows, but he is not letting it stop him. At eight months old, Killian is walking all over the place. Everyday our little boy amazes us and we are so thankful to the wonderful doctors and nurses who took care of him.

 

Story by Killian's mother, Caitlin - New Jersey