Hannah, born 2005

We had gone for our 20 week ultrasound in December 2004.  The position of the baby made it difficult to view all four quadrants of the heart, so we had to reschedule for January.  Since I have a history of Coarctation of the Aorta, our visit would be with a pediatric cardiologist.

January 10th arrived and it was a day we will never forget.  We were told our baby had Hypoplastic Left Heart Syndrome. Even as a nurse, I was unfamiliar with HLHS.  As the pediatric cardiologist explained, we were devastated. We had tried for so long to get pregnant. We were during everything we could to ensure a healthy pregnancy.

After lots of research, my husband and I decided we would deliver in Boston in order for our baby to have surgery at Boston Children's Hospital.  This was not an easy decision since we live so far away.

Hannah was born on May 4, 2005.  She was a beautiful pink baby. Looking at her, you would never know something was wrong with her.  In fact, her APGAR scores were 8 & 9. Two hours after her birth, she was at Boston Children's Hospital. Two days later, Hannah had the Norwood procedure (Sano type).  She did well. She had some difficulties with fluid balance and required a tiny amount of oxygen. She finally overcame those obstacles.

On May 24th, we were discharged and the next day we were on the airplane heading back to Louisiana.  Hannah has done well so far. There have been a few scares in the past three months but she has come through each one.  Unfortunately, she also has reflux. When one of the most important things for these babies is weight gain, reflux makes it so much harder.  You work so hard to get food into them only for them to bring it back up. Despite this, Hannah is gaining weight and has almost doubled her birth weight at 3 1/2 months.

Hannah had her Glenn on September 22, 2005.  She did well following her surgery and we were home within two weeks.  However, complications became apparent less than 24 hours after returning home.  She was admitted to the local hospital and two days later was medically transported back to Boston Children's Hospital.  Hannah had an occluded left pulmonary artery that required some interventions. We spent 3 1/2 in the Cardiac ICU before returning home again. 

We have been home for almost two months and Hannah is doing very well.  She continues to thrive and amaze us every day. She is a tough little girl.  We feel blessed to be a part of her life.

Story by Hannah's mom, Denyse - Louisiana