The best advice I can give to families that find themselves on this journey is two-part. First, find someone who has walked this road ahead of you. Second, take one day at a time.
Our daughter Halle is our heart warrior!
We found out that Halle had a congenital heart defect at my 20 week ultrasound. It was a terrifying moment – time just stood still. Soon after, the diagnosis we were sent to see Dr. Neill Videlefsky. He diagnosed Halle with a complete Atrioventricular Canal Defect. We knew immediately that she would need open heart surgery. We were petrified.
At six weeks old, we were sent from an emergency cardiologist office visit to the Egleston ER. Halle was in congestive heart failure. During this hospitalization, we found out that Halle had a chromosome abnormality and Gilbert’s Syndrome. We were overwhelmed and scared, but the Sibley doctors and nursing staff treated us like family, explaining each diagnosis and teaching us how to take care of our sweet little girl. Some of these nurses had taken care of Halle on several other occasions when she was at Children’s Healthcare of Atlanta. We keep in regular contact with them and love them like family! Halle was discharged after seven days and came home a whole new baby – feeling much better but on a host of medications and a feeding tube.
Halle’s open heart surgical repair was completed in June 2014. It was a stressful, fearful time for us as parents, but we were so incredibly grateful to have world-class care for Halle. She recovered from surgery without complications. With physical and speech therapy, she began to meet normal milestones. She got off the feeding tube at 10 months old and over the last three years she has continued to improve! It has been a long road – we have fought for every pound, every step and every milestone. She is so tough!
Halle will be four in December and is now the proud big sister to her younger brother Grant. She goes to preschool ½ day, does gymnastics and recently started soccer. She has some continued moderate leakage in her mitral and tricuspid valve, but this is monitored by Dr. Videlefsky, whom we LOVE and has been with us since the very beginning.
The best advice I can give to families that find themselves on this journey is two-part. First, find someone who has walked this road ahead of you. Ask them all of your questions. Let them encourage you and share their stories. Let them remind you that you are NOT alone! Second, take one day at a time. It is easy to get overwhelmed when you try to look too far ahead and guess and speculate about what MIGHT happen. Give your baby lots of hugs and kisses, and take one day at a time.
Halle has experienced quite a bit in her short life, and there is no way for us to express how grateful we are for Sibley and Children’s. They provided life-saving care for our sweet baby, long-term therapy for Halle and emotional support for our entire family. We are so proud of her and so grateful for the many, many people who helped to take such good care of her.
Today, Halle is THRIVING!