Our family in 2004

Our sweet Morgan was diagnosed in utero on December 9, 2002 during our routine ultrasound. Shock is the only way to describe how we felt that day as they explained Hypoplastic Left Heart Syndrome and Ivemark's Syndrome. Given the options we had to treat her heart condition, we chose the staged surgical repair. We were diagnosed in Hawaii, where my husband was stationed with the U.S. Coast Guard. Upon diagnosis we were also told that there was not a surgeon on the island that could save our child, so we were thankfully reassigned to the Bay Area of California where Dr. Mohan Reddy of Stanford could work his magic our our little miracle.

Morgan was born on 4/14/03 weighing a tiny 4 lbs. 14 oz.!!! She had her first surgery, the Norwood on her third day of life. Morgan did not show any signs of improvement and twice "crashed", bottoming out with sats and heartbeat in the 40's. A week later the cardiologist came to us and told us that she would need yet another repair to her fragile heart. So off they went to the operating room to do a pulmonary artery augmentation. After that Morgan finally started to show signs of improvement and they began to let her eat.

It was at that time they discovered that Morgan's intestines were so badly twisted from the Ivemark's Syndrome that they would need to do a procedure to "untangle" them. So at three weeks old, she went in for her third life saving surgery. At this time they "untangled" her intestines, "tacked" them down, and removed her appendix. Because of the Ivemark's, Morgan's internal anatomy is very complicated. She was born without a spleen, her stomach is on the right side of her body, and her liver lies midline in her body.

Morgan came home from her initial hospital stay at 43 days old! She was on NG tube feedings, but had a determined spirit and after only 6 months old the tube, she began to use the bottle and we no longer needed the tube.

When Morgan was 5 months old, she again went into severe congestive heart failure, so after a month on home oxygen, the doctor's informed us that Morgan would need her Glenn right away...and that is the day that has lived with us forever. Morgan came out of the Glenn a different baby... she was stronger, pinker, and just an all around happier baby (after three weeks of Glenn headaches!) Since then she has amazed her entire team of doctors. She is beating the odds and is beginning to tell the world about it!

Morgan still struggles with weight gain and our biggest obstacle is the Ivemark's over her cardiac troubles. She is constantly battling colds and infections...but to look at her you would never know it.

There are so few Ivemark's babies, we have not been told what Morgan's future holds, but one thing is certain—we are thankful for each day, each breath and each beat of her heart.