Lynsey Alverson, mother to now-2-year-old Charley Grace, had a smooth pregnancy and delivery with no major issues.
“The medical team was watching everything on the monitors during the delivery and Charley’s heart rate was fine,” says Lynsey. “But after she was born, she wasn’t crying much, had a blue haze to her and was making abnormal gurgling noises.”
The nurses quickly called the neonatal intensive care unit (NICU) team who took Charley for evaluation and testing.
The phone call that made time stand still
At first, the NICU team suspected pneumonia because Charley’s lungs looked hazy on her X-rays. But later that night, Charley had to be intubated because her oxygen levels kept dropping.
On Sunday morning, the day after Charley was born, a doctor met with Lynsey and her husband Cameron to tell them Charley needed to be transferred to another hospital to provide her the level of elevated care she needed. That elevated level of care was available locally at Atrium Health Wake Forest Baptist Brenner Children's Hospital in Winston-Salem. Because Lynsey was still recovering from labor and delivery, she had to remain at the hospital where she gave birth while Charley went on to Brenner Children’s Hospital. It’s a scary thing for any parent to be separated from their child, but Charley was in the best of hands. As soon as she arrived, the care team went to work.
It was here where Dr. Michael Walsh, a pediatric cardiologist at Brenner Children’s Hospital, and his team discovered Charley was born with a heart defect called Total Anomalous Pulmonary Venous Return (TAPVR) and needed heart surgery. Dr. Walsh reached out to his colleagues at Atrium Health Levine Children’s Hospital in Charlotte to work together in the next best step for Charley.
With a goal of creating a best-in-class heart program for patients across the Carolinas and beyond, physicians and teammates specializing in pediatric heart care at Levine Children’s and Brenner Children’s work as one fully comprehensive team to lead the region’s strongest pediatric heart program. This united program, with a presence in both Charlotte and Winston-Salem, allows for the seamless continuation of care for heart patients, their families and their support systems.
Together, the teams at both locations determined that the best thing for Charley was to be flown to Levine Children’s Hospital for surgery. Dr. Walsh called Lynsey and Cameron to confirm the diagnosis and share the team’s recommendation that Charley be life-flighted to Levine Children’s Hospital.
“That phone call literally made time stand still,” says Lynsey.
Charley’s first open-heart surgery
That evening, Charley was flown to Levine Children’s Hospital, where she had an expert team waiting for her. Fortunately, she was stable enough to where the surgery could be scheduled the next day, allowing Lynsey to be discharged from the hospital and make the trip to Charlotte with her husband.
“We were discharged from the hospital on Monday, immediately went home, repacked because they told us we could be in Charlotte for three to four weeks and headed to Charlotte that afternoon,” she says.
On Tuesday morning, Charley had her first open-heart surgery to repair the TAPVR with Dr. Paul Kirshbom, a pediatric cardiothoracic surgeon at Atrium Health Levine Children’s. The surgery and recovery went well and Charley was discharged from the hospital just two weeks later.
“We were amazed,” says Lynsey. “We have nothing but fabulous things to say about Levine Children’s and Brenner Children’s. We think Dr. Kirshbom walks on water.”
Returning home after surgery
Charley’s parents were grateful she was able to return home so quickly so the new family of three could start their routine together. While most families with newborns see their pediatrician for regular checkups, the Alversons’ new routine also included visits with Dr. Walsh.
Since Charley’s expert cardiac team is available in both Charlotte and Winston-Salem, Charley is able to stay close to home for most of her cardiology appointments, which is a huge plus in navigating life with a newborn and also the personalized care the family needs.
“Dr. Walsh has always been incredibly responsive to our concerns and array of questions,” says Lynsey. “We adore him.”
Unexpected complications
All seemed to be going well until March when a routine echocardiogram showed Charley had scar tissue buildup and stenosis (narrowing) of her veins. This caused her blood pressure in her lungs to be much higher than normal. Walsh recommended Charley return to Levine Children’s Hospital for a cardiac catheterization procedure to help open her veins and hopefully avoid surgery.
A few days before Charley’s scheduled catheterization procedure, Lynsey noticed Charley had labored breathing, so she called Walsh. Walsh was able to arrange for an urgent evaluation and, again, consulted with his colleagues in Charlotte to have Charley admitted to Levine Children’s Hospital for a second time. The medical team told Lynsey and Cameron to go to the hotel to get some rest and that they’d call if there were any issues. Around 4 a.m., the phone rang. Charley’s care team explained they needed to move up the cardiac catheterization procedure because she wasn’t doing well.
Unfortunately, the procedure didn’t go as planned, so Charley needed open-heart surgery again.
“It was not the news we wanted to hear, but we wholeheartedly trusted the team at Levine Children’s,” says Lynsey.
A second open-heart surgery
Kirshbom performed Charley’s second open-heart surgery, when Charley was just 3 months old. Thankfully, the surgery was a success.
Charley spent 12 days recovering in the hospital and then was discharged. Her recovery went smoothly, other than some minor feeding issues that she has since overcome.
Ongoing support from Levine Children’s and Brenner Children’s
Since her surgery, Charley has been back to Levine Children’s twice to meet with the cardiac neurodevelopmental team, that helps patients who have had heart surgery early in life with developmental challenges.
“We worked on the things they asked us to work on with Charley’s speech therapist,” says Lynsey. “At our follow-up appointment, they were impressed by how much Charley had improved in all areas. We’re really proud of her.”
Charley is now able to eat and drink as expected for her age. She sees Walsh every six months for heart checkups. Since her surgery, her numbers have stayed within a healthy range.
“People who meet Charley for the first time have no idea she’s gone through heart surgery,” says Lynsey.
A proud big sister and thriving toddler
In December 2022, Charley became a proud big sister to baby brother Cash.
“She’s in love with him,” says Lynsey.
Charley loves to play with her dolls, basketball goal and outdoor playhouse. She’s also a big fan of “Frozen” and enjoys dancing. Lynsey hopes to sign her up for dance classes this fall.
“From sunup to sundown, she’s ready to go and talking away,” says Lynsey. “She doesn’t tire easily and never meets a stranger. She’s something else. We love her.”
Lynsey and her family are proud of their heart warrior and thankful for the seamless coordination of care between Brenner Children’s and Levine Children’s.
“People can tell you all day long that babies are resilient, but to see it firsthand and watch all the things she’s gone through and how she’s recovered, it’s amazing,” she says. “There’s hope in the world and amazing places like Brenner and Levine that take care of kids and their families.”
Learn more about pediatric cardiology at Levine Children’s and Brenner Children’s.
