A little more than a year ago, Lawrence resident Stephanie Greenwald was fixing her daughter Lilly’s hair when the girl suddenly fainted.
“She was white as a ghost,” Greenwald said. “Her lips were turning blue, she was not breathing. I’m freaking out, but her little sister was with us, so I’m trying to like keep it together so she doesn’t freak out.”
Greenwald said Lilly woke up briefly, but then fainted a second time. They went to the ER, but by the time they got there, Lilly was fine and the ER doctors couldn’t find anything that needed immediate care. They recommended a follow-up visit with their primary care physician and an echocardiogram — an image of Lilly’s heart.
That test showed that Lilly’s aorta — the artery that transports blood from the heart to the rest of the body — was seriously malformed through a birth defect. But, Greenwald said, Lilly — now 11 — had been asymptomatic her whole life, as far as they could tell.
So, they got more tests and another echocardiogram. That one showed that Lilly has two aortas — a right and a left — which is not typical. The left one, which is where the aorta is supposed to be, is the “bad” one, and the right one has been picking up the slack, which is why Lilly had been able to function.
That part was good, but there was more.
“(The aortas) had formed this vascular ring around her esophagus and her trachea,” Greenwald said — and the ring was constricting both.
Riley Hospital for Children physicians recommended waiting to see if Lilly developed symptoms before moving forward with what would be a complicated surgery. Greenwald researched the condition and decided she wanted a second opinion.
“I found the best hospital in the world at Boston Children’s Hospital,” she said. “They did a free second opinion — they have a huge multidisciplinary team that looked at all of our records. They called me when they had my records and asked so many questions that I would have never connected to this issue.”
Some of the questions included what kind of food Lilly prefers (noodles because they’re easier to swallow) and whether she had worse respiratory symptoms than normal when she got sick (yes). Lilly also has sleep apnea and acid reflux. So, Greenwald said, while it wasn’t obvious at the time, Lilly has been showing symptoms throughout her young life.
“Boston came back with their diagnosis and said she has a circumflex aorta and it is causing major compression on her right side and on the back of her esophagus and her trachea,” Greenwald said. “We need to basically transplant it.”
The surgery will involve opening the chest, removing the malformed left aorta and replacing it with the healthy right aorta.
Greenwald said that while waiting was an option, it could lead to more complications for Lilly later.
“I talked to somebody who had the surgery done at 35 years old and she can no longer swallow,” she said. “She does not have the ability to swallow — she has to rely on gravity to get her food down.”
Greenwald noted that the fainting episode that led to Lilly’s diagnosis didn’t have anything to do with her heart defect.
“I made her pass out because I was braiding her hair and caused that from something called hair-grooming syncope,” she said — a condition that can cause people to faint when having their hair brushed. “That’s why I don’t feel like we should ignore what we found. We were meant to find this. We were meant to fix it.”
The family will travel to Boston for the May 31 surgery, and a family friend has set up a Go Fund Me account to help offset expenses that insurance won’t cover.
Greenwald said their health insurance was supposed to pay for everything after the out-of-pocket limit had been met, but the company recently changed the criteria and will cover less than half.
Greenwald said people have been generous and she is grateful for the support. She said the best way she can express her appreciation is to promote blood drives in the area, to help make sure there’s enough blood on hand to save lives during surgeries like Lilly’s.
The Go Fund Me account can be found at gofundme.com/f/lemonade-for-lilly.
