Congenital Heart Defects (CHD) Diagnosis
An ultrasound at 30 weeks diagnosed Lauren and Matt’s daughter, Everly, with Congenital Heart Defects (CHD). Doctors discovered that Everly’s aorta wasn’t connected to the rest of her body, a condition known as interrupted aortic arch (IAA). When uncorrected, the condition is fatal.
“She would have come home and essentially looked fine, then all of a sudden she would have turned blue, started losing circulation and been rushed to the emergency room where they wouldn’t have been able to fix her,” Everly’s mom explains.
Everly’s Severe IV Infiltration
Those first days and weeks in the NICU were “a little blurry,” Lauren admits. However, she does recall early on in the night when a nurse called to tell her: “One of the IV lines does not look good.” Maintaining an IV line was crucial to ensure Everly was receiving the medication keeping her heart valve open until surgery. Her heart medication couldn’t mix with other IV fluids like the lipids and insulin she also needed, so her medical team had to find another viable IV site. The nurse called back later to inform the family that they had found an IV site in the baby’s foot. The IV stayed in place through her surgery on August 7 and was removed on August 9. That’s when even more problems emerged for baby Everly.
“All of a sudden, this huge wound appeared, bright yellow,” her mom remembers. “And it just kind of got worse from there.”
The IV Injury’s Lasting ImpactAlthough Everly’s family is extremely grateful this was the biggest complication she had during her first surgery, dealing with their baby’s IV infiltration wound was anything but simple. “It’s a big deal to me, because I’m the person who changed the dressing two times a day while she screamed,” her mom says. Nearly a year and a second open heart surgery later, and Everly’s right foot is still visibly larger than the other. There’s no way to say if it’s going to impact the 10-month-old’s ability to start to walk. “She appears to have good range of motion right now and can pull to stand, so fingers crossed it won’t impact physical developmental progression,” her mom shares. While the most important thing to fix is Everly’s heart, her mom does wonder if the IV infiltration wound will impact her daughter long-term, even in smaller ways. What if her feet are never the same size? And she can’t splurge on a nice pair of shoes because she has to buy two pairs. What if she has a large scar and is embarrassed when she gets a pedicure with friends? Lauren says that they’ll cross that bridge when they come to it – for now, they’re just grateful that she’s alive. It’s all about perspective.
Looking to Everly’s Future
Like many parents with children suffering from congenital heart defects (CHD), Lauren’s days are filled with checklists and doctor visits and concerns.
Everly also has a large hole in her heart, combined with some smaller defects. She’s already had three open heart surgeries with even more to come as she gets older.
Lauren says one big lesson of Everly’s hospital experiences is how important it is for parents to be their children’s voice. She recommends finding a team of doctors and nurses who value you as an integral part of the team and decision-making process.
“We are so lucky to have a team that makes us feel like our thoughts and insight matters. They really listen to us.”
When it comes to IVs, she’s now much more involved in the process and checks all of her daughter’s IVs carefully. And when she sees something she’s not comfortable with, she alerts the nurses immediately.
To any parent with a hospitalized child, Lauren says, “Your baby can’t talk. They can’t say that it hurts.”
Her biggest piece of advice? “Do not feel bad advocating for your child. You are the person who’s there for the long haul, so you see the changes (or lack of changes) from day-to-day and month-to-month.”