Alexander's heart

Alexander was born on February 27, 2009.  He was diagnosed with L-Transposition of the Great Arteries( Ventricles are switched), Ventricular Septal Defect (hole in between the ventricles), Ebstein's Anomaly (valve problem), and an over-riding aorta. 

Alexander was born on schedule.  We didn't have any issues with labor.  He was born a healthy 8 lb 9 oz baby boy.  They had diagnosed some of his heart defects in utero so a team of people were ready to whisk him away to the NICU as soon as he was born.

He was the biggest kid in the NICU.  They didn't have cards big enough for his footprints.  The nurses enjoyed seeing a big kid instead of preemies.  We got to go home after 4 days and I was overjoyed that he was doing so well!

He was seen by at least one doctor each week after we went home.  He has the best Cardiologist and Pediatrician.  He had a lot of trouble eating because he would get really tired.  He could only eat one ounce at a time, and then sleep for a while.  His father and I learned to sleep in the recliner with him because we were up almost every hour feeding him.  When he went into congestive heart failure at about one month old, they decided to do a pulmonary artery banding.    He did really well.  Within the first month after the banding he went from the bottom 10th percentile in height, weight, and head size to the 40th percentile.

During this time it was decided that the best route would be to close the VSD and possibly put in a pacemaker.  He was doing really well with the PA Band in place.  He was growing, thriving, meeting his milestones. 

At the last checkup with Dr. Rajan at Children's Mercy Hospital, he talked to us about the Double Switch Procedure.  He was at a conference and talked about this approach with others.  He brought back the information to us and gave us this new option.  He told us that it was our decision to make;

the conservative approach with just closing the hole and possibly putting in a pacemaker, knowing that the weak ventricle would wear out and he would require a heart transplant,

or the Double Switch Procedure which would hopefully let his heart operate like it was supposed to, but has only been utilized since the 1990s and long term outcomes are unknown.