Phillip and Nicole were thrilled to find out they would be parents. But early in the pregnancy with their first child, Nicole began showing early symptoms of a possible miscarriage. She overcame that obstacle but at 20 weeks of pregnancy, a fetal echo at Sibley Heart Center Cardiology revealed that baby Addison had Tetralogy of Fallot and an arrhythmia in which the top portion of the heart was beating three times faster than the bottom.

Nicole was induced at 39 weeks, and Addison had open heart surgery at 6 days old to insert a BTT shunt (Blaylock-Thomas-Taussig shunt). At 8 months old, she had a second surgery to repair a VSD and pulmonary atresia, and the family expects one more when she’s older.

“We follow up with Dr. Wallace once a year, and she has seen slight changes but nothing serious yet,” Nicole said. “If you saw Addison, you would never know what she’s been through. Her scar is very faint, but we call it her lifeline. We want her to be proud of it, and we want her to know that without it, she wouldn’t be here.”

Nicole said Sibley has been a lifeline to her family as well. The team took great care to explain every aspect of Addison’s condition and specific surgeries, even giving Nicole and Phillip a tour of the cardiac intensive care unit (CICU) at the Children’s Heart Center beforehand so they would be familiar with the machines and procedures before seeing their own child in that position.

We’re so grateful to be where we are, with state-of-the-art facilities and top-notch care for our daughter,” Nicole said. “You just know the people who work at Sibley want to be there, and they love their work. They have chosen and committed to it, and it’s very obvious in everything they do. We’re aware that another surgery is a bridge we’ll have to cross someday, but we have no worries. We’ve totally trusted God to place the right doctors, nurses and staff to take the best care of her and make the decisions that are in her best interest.”

Nicole said caring for a child with CHD has opened up new perspectives for her, and people have come into her life to support her in ways she couldn’t have imagined.

“God places people in your life at the right time and right season to help you,” Nicole said. “This experience has grown our faith and our relationship with each other. You realize that some things are out of your control, and you have to trust. As a couple, you learn that no one except the two of you can experience the emotions you have for the living being you helped create. You’ve been in the trenches together, and you gain a new appreciation for life and the joy that your child brings.”

Her mom says that Addison, now 6, is sharp as a tack, quick witted, smiley and loves to learn. She loves kindergarten and her favorite things to do are playing with her stuffed animals, playing outside and “making stories.”

“She embodies what it means to live life to fullest,” Nicole said. “It’s obvious to everyone that Addie is loved.”

For more information about Sibley Heart Center Cardiology and our pediatric cardiology specialists, click here.