Iris, an almost two-year-old girl who was diagnosed with a complete atrioventricular canal defect (CAVA) and atrial septal defect (ASD) of the secundum, has been described by her parents as “a music lover and someone who always has everyone’s attention.” While she constantly brings a smile to her parents Lauren and Ryan’s faces, her journey to where she is today has been a long and hard process.
Lauren was six weeks pregnant with Iris when blood test results show she was flagged with Trisomy 21, also known as Down syndrome. These babes are more prone to have heart conditions, and Lauren and Ryan were sent to Sibley Heart Center Cardiology to learn more.
“We met with Dr. Videlefsky and he thoroughly explained all the possibilities that came come with Trisomy 21 and anything we needed to prepare for,” says Lauren. “He explained it simply and not in medical terms that went over our heads, and he understood the emotional side of the possibilities.”
After Lauren’s first fetal echocardiogram (echo), Dr. Videlefsky discovered Iris had multiple heart conditions. He drew Ryan and her a picture to better understand what’s going on with Iris’s heart and what to expect. Lauren and Ryan still have this photo today.
“It was a real source of relief for us to see what was going on with her and explained to us in terms we understood,” Ryan says.
This was not the only way Sibley Heart Center Cardiology went above and beyond for the family before Iris was born. When they came in for their monthly and weekly appointments, Lauren and Ryan were able to see the same doctor each time. Lauren says, “Our doctor went out of his way to be accommodating for us and referred us to other doctors who could answer our questions. We always left his office feeling confident.”
On February 10, 2017, Iris was born into a room filled with people to make sure she was okay. The staff and family were prepared for the best and worst outcomes, and Iris was lucky enough to go home with her parents when she was two days old. Once she was home, the family’s main priority was to prepare Iris for her first surgeries, which were complete atrioventricular canal (CAVC) repair and atrioventricular canal (AV) repair, and she needed to be the proper weight to go through them.
At five months old, Iris went in for her surgery with Dr. Kirk Kanter. “The day of surgery was frightening, but Sibley had prepared us enough for it beforehand,” says Lauren. “Throughout the surgery, which seemed like an eternity, they constantly called in to give us updates. Although it was scary, we had a good experience with them.”
Iris recovered well from the surgery and had the support from not just Lauren and Ryan, but her two older siblings. “They were in the room after she had surgery, but they weren’t scared at any point,” Ryan says. “Today, Iris thinks they’re her caregivers. They come to her appointments and hold her hand when she’s getting ecos. If they ever have questions, the doctors at Sibley will answer them. They know they she has a heart issue, but it’s not a big deal. They say her scars are beautiful, and they love their little sister so much.”
Lauren and Ryan praise Sibley for everything they’ve done for their family. They described the team as responsive and always proactive.
Lauren and Ryan had this to say to other parents who are going through a similar situation: “It’s scary, but it’s okay to be scared and know there’s a light at the end of the tunnel. Using resources may be hard to do (as we are not ones to ask for help often), but they’re helpful. Be an advocate for your child and be their voice; ask questions and learn as much as you can. You have to see the bigger picture.”