Madeline Jeanette (right) with Ethan

Madeline's First Christmas

Madeline made her debut into this world on February 27, 2002. Labor and delivery progressed rapidly, and there seemed to be no problems right after birth. During Madeline's initial exam, a loud heart murmur was heard, so a cardiologist was called in for a consult. He believed, without benefit of an echocardiogram, that she had an ASD or VSD, so we were referred to a pediatric cardiologist at Children's Hospital in Oakland after discharge from the hospital. An echo was performed at Children's, and the diagnosis of AV Canal was made.

Madeline was sent home with medications and our job was to help her gain weight and grow before her surgery date. When she reached three months of age, she had difficulty gaining weight and was breathing very fast all of the time, so the decision was made to set a surgery date. Dr. Frank L. Hanley and his team operated on June 18th, 2002. The surgery ended up taking longer than expected. The diagnosis of ASVR wasn't made until the surgery was in progress, so an atrial baffle was made to help redirect venous blood flow to the correct side. The surgery lasted more than 7 hours, and Madeline was on bypass twice during the operation.

About a week after surgery, Madeline's kidneys weren't functioning well, and she swelled up with fluid. She had a second operation to place a peritoneal dialysis catheter to help drain off fluid. A few days later, an NG tube that had been placed apparently caused a bowel perforation near her duodenum, so a third surgery was performed to repair the perforation. A rare intestinal malrotation that is found in non-Down's Syndrome AV Canal/heterotaxy patients such as Madeline was also corrected with the Ladd's Procedure, and her appendix was removed (which was located in her upper left quadrant instead of the usual lower right quadrant).

Madeline progressed slowly after all these surgeries, and needed weaning off the strong narcotics she was given to keep her comfortable. She had an allergic reaction to antibiotics given to her to fight peritonitis. But, after all this, we were able to bring her home exactly 4 weeks to the day after her initial admission to the hospital. She was discharged with a pericardial effusion that resolved with aspirin treatment. She is eating and gaining weight rapidly, is back to her smiling self, and is making us thankful every day that she is here to show us what true unconditional love is. As of November 2002, Madeline was completely medication free.

In October 2004, Madeline was hospitalized in congestive heart failure. It was attributed to cardiomyopathy and Junctional Ectopic Tachycardia (JET). After 2 weeks in the PICU, she was discharged home on medications which include amiodarone, enalapril, digoxin, Lasix and aspirin. She continues to do well with her follow-up visits, and will be monitored for the time being.

We owe a debt of gratitude to Dr. Hanley and his team, Drs. Bishop and Butler and their teams, Drs. Saba, Avasarala and the other cardiologists of the group, as well as the staff at Children's Hospital for all they did to help Madeline.