Early heart surgery relieves pressure for little drummer girl
Published on Thursday, September 27, 2018
By: Annie Oeth
Sydney Mead loves to play the drums, listening close to her iPad’s Drum Kit and then knocking out the rhythm for real.
When it comes to the beat of her own heart, though, things haven’t gone as easily.
Sydney, 9, has Williams syndrome, a genetic condition present at conception and caused by spontaneous gene deletion on part of chromosome 7. Cardiovascular disease, developmental delays and learning challenges are among the characteristics of WS, as are highly social personalities, an affinity for music and striking verbal abilities. WS affects 1 in 10,000 people worldwide, according to the Williams Syndrome Association.
Kids with WS are often friendly, sweet and loving, and Sydney shares that happy outlook. For parents Brandi and Andy Mead of Madison, congenital heart defects have been “the scariest part for me” since her first child’s birth, said Brandi. An easy delivery in Flowood was quickly followed by a race to save Sydney’s life.
There was an immediate transfer to Batson Children’s Hospital at the University of Mississippi Medical Center. Dr. Makram R. Ebeid, pediatric cardiologist on call, allayed initial fears that she’d need a heart transplant and diagnosed coarctation of the aorta — a narrowing in part of the aorta — that needed immediate surgery. With no pediatric heart surgeon onsite at that time, baby and mother embarked on a medical flight to Children’s National in Washington, D.C.
An expected two weeks at Children’s National stretched into four months and a rollercoaster of improvements and setbacks for little Sydney. With very narrow pulmonary arteries, a condition of Williams syndrome, she had trouble breathing off the ventilator. “There were several times we didn’t know if she would make it because she couldn’t breathe without the vent,” Brandi said. When Sydney was finally stable enough, she was transferred to Batson Children’s Hospital and, once her family was set up for her support, released home. Sydney has been under Ebeid’s care since.
At 18 months old, Sydney needed another surgery. Narrowing in the vessels to her lungs was causing significant obstruction and pressure buildup in her heart. Because she was little, doctors had two options: put in a relatively small children’s stent that could become a problem as she grew; or, do the Hybrid Procedure, in which the surgeon opens the chest and heart for direct placement of the small-size adult stent. Dr. Jorge Salazar, then at Batson, and Ebeid performed the Hybrid Procedure.
“That helped quite a bit,” Ebeid said. “We can go in and periodically, we can enlarge this stent as she grows. So we don’t have to open the chest anymore. We go through the neck, and we can keep opening it. We can keep up with her growth.”
The new seven-story children’s tower at UMMC, set to open August 2020 adjacent to Batson, will even better support such services. “Right now, we are offering this. The new tower is going to allow us to continue offering it, in a better way — in a more patient-friendly, family-friendly and physician-friendly way,” Ebeid said, with more space to see patients and faster service.
Sydney sees Ebeid every six months and averages a heart catheterization about every couple of years, said Brandi.
Now heading into the third grade at Madison Avenue Elementary, Sydney is “super happy,” Brandi said — a music-loving drummer who wakes up in a good mood every day. When the family participated in the RebelTHON fundraising event at the University of Mississippi in Oxford, Sydney even got a chance to play drums onstage.
She loves to socialize. “She talks to everybody. There’s no doubt that she will probably be a greeter somewhere one day.”
If not for Children’s of Mississippi’s role in Sydney’s life and care, “She wouldn’t be here. … I know, without a doubt,” Brandi said. “They made all the right calls.
“It’s kind of like he just knows her,” she said of Ebeid. “I think of him as family.”