Brave Hearts: How one Mom faces her daughter’s congenital heart disease

Avery and sunsetFinding out your child has congenital heart disease (CHD) can send you on an emotional roller coaster. “You can’t help but think, is this my fault? What did I do wrong?” says Jessica Nigrelli, whose daughter Avery was diagnosed with CHD when she was 16 months old.

When Avery was a baby, she had an on-again, off-again heart murmur that was checked every three months. When the murmur persisted at 16 months, her primary care doctor recommended she see a cardiologist from Boston Children’s Hospital. At the Heart Center’s outpatient clinic in Waltham, Dr. Susan Saleeb discovered Avery’s atrial septal defect (ASD). An ASD is a hole in the wall that separates the heart’s upper two chambers, the left and right atria.

The diagnosis shocked Jessica and spurred a great deal of anxiety. “Avery appeared healthy. Looking at her, you would never know anything was wrong,” Jessica says. The word ‘defect’ just sets off a million bells and alarms in your head. Processing that took some time.”

Communicating with Avery’s doctorsMom and Avery

Having an open and honest dialogue with Saleeb helped Jessica stay strong and prepare for each next step in Avery’s treatment plan.

“I would call her and she would talk to me for an hour,” says Jessica. “It felt like we were writing the story of what was going to happen. I asked her, ‘what would you do if it was your child?’ She told me Avery needed surgery, and the riskiest thing to do would be to avoid the procedure. She talked to me as a mom and as a specialist.”

Jessica and her husband, Andrew, had heard about Dr. Pedro del Nido, MD, and told Saleeb they wanted him to perform Avery’s surgery. They also wanted to meet with him beforehand to discuss everything. Saleeb helped arrange this, and the Nigrellis met with del Nido about a month before the procedure. “He was very reassuring. He normalized the whole thing for us,” Jessica says. “He does two of these a day. He had this quiet confidence and calm in his voice.”

Parents have all kinds of questions running through their minds at times like this— and not all of them are logical or what a doctor might consider clinically important, says Jessica.

One of her biggest fears was that Avery would be kicking and screaming as she was brought into surgery. She couldn’t stop thinking about that scenario. She also wondered what would be the most uncomfortable or painful part of the whole experience for Avery. Would it be the needles? The strangers? The sticky adhesives on her chest that monitor heart rate?

“It was really helpful to talk with the Heart Center’s Child Life Specialists,” says Jessica. “They told us there isn’t much you can do to prepare a child Avery’s age for the day of surgery, but you can buy her toy doctor’s kits to play with. The best thing we could do was be strong for our daughter and separate what we were feeling from what she was feeling.”

Parent networks make a difference

Jessica also learned that opening up about her concerns became easier when she found a supportive network of CHD parents who have gone through similar things. “You’re not the only one. Make sure you find other parents, and don’t do it alone. The strength you can find from others’ experiences is extraordinary.”

Avery birthdayLittle tips and tricks from other parents—such as bringing small comforts of home (Avery’s sound machine, favorite toys and blankets) to the hospital to make this new and scary place seem familiar— helped Jessica feel like she was more in control. “I thought, here is something I can do. I couldn’t undo her ASD, but I could do right by her.”

One woman told Jessica something she’ll never forget: “She said, ‘This experience will be part of the rich history of your little girl’s life.’ Hearing that made me think, yes; we can shape this memory for her, and we’re going to make sure this contributes to her self-confidence going forward,” says Jessica.

Avery’s surgery to patch the hole in her heart was a success. Today, she’s a thriving, playful three-year-old girl who loves animals and singing along to songs from Mary Poppins and The Sound of Music.

She calls her scar her beautiful ‘boo,’ short for boo-boo. Her parents call her Braveheart.