A rare chromosomal disorder called Williams syndrome left 6-year-old Jordan Ervin with a host of medical problems, including severe heart defects. But it also gave him a gregarious personality and an infectious smile, one that made the multiple medical appointments and hospitalizations much easier to handle, according to his mother, Seville Spearman.
“Jordan is such a champ,’’ Spearman said in a recent Inside Stanford Medicine article. “He’s always been just a really happy kid.”
And in December, he became a much healthier one thanks to the skillful work of Stanford cardiothoracic surgeon Frank Hanley, MD. More from the piece:
It was a complicated case. The stenotic arteries caused severe pulmonary hypertension. In less-severe cases, in which there is only one area of stenosis near or at the pulmonary valve, doctors can perform a fairly simple surgical catheter procedure that uses a tiny balloon to expand the artery. But Jordan had multiple narrowings: 12 in his left lung and 14 in the right lung. The balloon technique is much less effective in this scenario, and no other surgical techniques have been developed to treat these stenoses. So Jordan would need a different approach.
That approach was developed by Hanley, who receives referrals from all over the world. He’s the pioneer of a one-stage, fix-all-the-defects surgery called unifocalization.
“We’re definitely on the leading edge of this kind of surgery,’’ said Hanley, who holds the Lawrence Crowley, MD, Endowed Professorship in Child Health. “Jordan is going to have perfectly normal life expectancy.”
Ervin is back in school in Illinois, where his parents are delighted with the outcome. His mother said in the story, "Everything is back to normal, but I will never take anything for granted again."
Previously: How better understanding Williams syndrome could advance autism research, Pediatric surgeon fixes "heart that can't be fixed" and Patient is "living to live instead of living to survive," thanks to heart repair surgery
Photo by Norbert von der Groeben