2022 Children's Miracle Network Hospitals Champion: Nolee Jones of Pearl
Published on Thursday, January 27, 2022
By: Annie Oeth, aoeth@umc.edu
When Nolee Jones grows up, she wants to be a registered nurse, perhaps caring for children who started life as she did, with a congenital heart condition.
Nolee, whose heart was mended by surgeons at Children’s of Mississippi, is the state’s 2022 Children’s Miracle Network Hospitals Champion. The 8-year-old from Pearl stays healthy by seeing her cardiologist at the Children’s Heart Center at the state’s only children’s hospital.
Children’s of Mississippi is the pediatric arm of the University of Mississippi Medical Center and includes the children’s hospital in Jackson as well as outpatient clinics around the state.
Every year, 170 local Children's Miracle Network Hospitals identify a Champion in each of their local communities to serve as the face for children treated at their local children's hospital. These ambassadors spend their year advocating for the charitable need of children's hospitals across North America.
“Nolee has been a wonderful patient,” said her cardiologist, Dr. Onyekachukwu Osakwe, assistant professor of cardiology. “She was quite sick as a baby with multiple congenital heart defects. We initially managed her with medications as a baby, but she struggled with gaining weight. Her heart surgery was done before her first birthday, and she had multiple defects repaired."
Following the heart surgery, she has had excellent results and is doing very well, Osakwe said. "I do not anticipate that she will need any further procedures, but we will continue to follow her closely. It is always a pleasant visit when she comes to clinic. She is always very happy and playful. She is a true testament of the excellent services we are able to provide her at Children’s of Mississippi.”
Pearl Mayor Jake Windham and Miss Mississippi Holly Brand joined Nolee’s friends and family Wednesday in celebrating her announcement as the state’s Champion at the Mississippi Children’s Museum in Jackson.
“Nolee and her family are the folks that Pearl is about,” Windham said. “They work hard, and they never quit. Nolee is an inspiration to my heart. She has achieved so much in life already, and she’s got a lot more to do.”
Nolee is “a strong woman in the making,” said Brand. “No one is too young to make a difference, and Nolee is living proof that statement is true.”
Nolee will bring strength and joy to the role of Children’s Miracle Network Hospital Champion, said Kathryne Lewis, a UMMC development liaison. “She is truly strong beyond her years and has a beautiful, happy spirit.”
Lewis said her team first met Nolee during Mississippi Miracles Radiothon last year.
“She was here for an appointment with her cardiologist and wanted to see what was going on in the community room of the Kathy and Joe Sanderson Tower. It turns out it was actually her 8th birthday that day," Lewis said.
"Right away, Nolee came into the event with a big smile and her warm personality and volunteered to share her hospital story live on the radio to support Children’s of Mississippi. She was a natural, and I know she’s going to be a wonderful representative for Children’s of Mississippi and our patients and their families.”
The family business, Bates Inflatables, has already shown support for Children’s of Mississippi by raising $1,000 in Nolee’s honor.
About one in every 100 babies born has a congenital heart defect, making it the most common type of birth defect. According to the U.S. Centers for Disease Control and Prevention, about 1 million children live with congenital heart defects. Because of medical advances, there are now more adults – about 1.4 million – than children with congenital heart defects.
“Nolee is doing great,” said her mother, Chelsea Bates, who is a registered nurse. “It has been a blessing that each appointment with Children’s of Mississippi ends with positive results, and Nolee’s heart is still in great condition.”
Not long after Nolee was born in Hattiesburg, she began to have difficulty breathing and gaining weight, her mother said. “She wasn’t as active as other babies. The pleasure of drinking a bottle caused fatigue and was literally breathtaking for Nolee.”
For the first three months of her life, Nolee had several checkups and emergency department visits for breathing problems, projectile vomiting and fatigue.
“Nolee would become very sweaty and fatigued when trying to drink a bottle, only finishing two ounces before crying herself to sleep,” Bates said.
After lab tests showed her oxygen level was low, Nolee was taken by ambulance to Children’s of Mississippi. There, it was discovered that Nolee was born with two holes in her heart, an atrial septal defect and ventricular septal defect.
“Our visit to Children’s of Mississippi saved Nolee’s life,” Bates said. “She was placed on medications to help her heart pump effectively and assist with preparing her for surgery.”
On Aug. 20, 2013, Nolee underwent open-heart surgery for repairs at Children’s of Mississippi. “We spent several weeks at Children’s of Mississippi, and everyone was truly amazing, caring and supportive toward Nolee and our family.”
Nolee's care "has been nothing short of phenomenal,” Bates said. “We love the doctors, nurses and staff. I feel that Nolee is in great hands and will always receive the proper medical treatment she requires when receiving care at Children’s of Mississippi.”
Nolee is an honor roll student at Northside Elementary who enjoys dancing and math. Northside educators attended her announcement to cheer her on.
“She is a wonderful student,” said Jessica Ferguson, one of her teachers. “Nolee is super sweet, works hard and cares about her classmates.”
Nolee has always been a champion, Bates said. “She’s proven to be a strong champion already, fighting to survive with a congenital heart defect. Nolee is a beautiful, smart and awesome little girl – it's a blessing that Nolee is still here with us today. Her life is truly a miracle.”