DAENA'S STORY
Daena was born in August of 2001. What follows are the events leading to her birth and beyond?

We were expecting our second child. Being 35 years old and pregnant brought extra excitement and with it extra rounds of prenatal tests. Once we hit our 20th week, we completed a ‘multiple marker screening test’ and low-level ultrasound. During our ultrasound exam, our doctor suggested that we have a fetal-echo cardiogram. It was during this test, at 22 weeks of pregnancy, that we, were given the news our unborn baby had Hypoplastic Left Heart Syndrome (HLHS). Like others, we were given the options of terminating the pregnancy, compassionate care, or lastly the 3-staged surgery and/or a heart transplant. The day was scary, confusing, full of tears and surreal. The first two options were out of the question, so the search for more information began. We met with heart surgeons from hospitals in Connecticut and then to Boston Massachusetts.

Our Obstetrics doctor was very helpful over the next few weeks and helped us make arrangements in Boston for specialized prenatal care. After complications found during last office visit, we were immediately scheduled for a cesarean birth. Our daughter Daena was born at Brigham and Women's Hospital, and transfered directly to Boston Children’s Hospital. After four days of being monitored in the cardiac ICU she underwent her first of three open heart surgeries, the Norwood Procedure. Nine weeks later, the misfortune and horror of 911, a surgically placed feeding tube and many sleepless nights we finally left the hospital and went home. Her first procedure was successful, and our journey to surgery two began. Daena needed to have her bi-directional Glenn at approximately nine-months of age. Surgery three, the Fontan, was at age 2. All were successful. The only remaining heart related bump is a still open fenestration.

After many other non-heart related issues, including being diagnosed with Kabuki Syndrome, Daena’s heart is functioning terrific and she is a happy, 5 year old who brings that same happiness to everyone she meets! She will be returning to Kindergarten this fall, and enjoys time with friends at school and at her daycare.

We pray for her and thank God often for Darien, Daena’s heart healthy sister, for Daena, and for everyone that continues to help our family and be in our lives. She is truly special to us.

Story by Daena’s mom, Denise.

This Story and many others from families with a child born with a congenital heart defect can be found at www.littlehearts.org/stories