A day after Ezra Stalker was born, her pediatrician noticed a bump on her spine. Ezzie, as she’s affectionately called, was referred to neurosurgeon John Ruge, MD, at Advocate Children’s Hospital.
“She needed an MRI,” explained Ezzie’s mother, Hillary. “But we had to wait until she was 6 weeks old because the risk of anesthesia would have been too great if she were any younger.”
The scan revealed Ezzie had tethered spinal cord syndrome, which is a form of spina bifida. Normally, the spinal cord moves freely inside the spinal canal. A tethered cord is when part of the spinal cord is attached inside the spinal canal, and the spinal cord cannot move freely.
Dr. Ruge was concerned that there might be damage to Ezzie’s internal organs—especially her bowel and bladder—if he didn’t act soon. Surgery would give her the best quality of life.
“We had only a week and a half to prepare for it … and the possibility that she wouldn’t make it out of surgery.”
At just 8 weeks old, Ezzie underwent a three-hour operation on her spine.
“The surgery wasn’t 100% successful. Her spinal cord was more tethered than originally thought,” said Hillary. “Dr. Ruge wasn’t sure if she would have motion in her right leg or what kind of internal damage she may have. We were told we’d just have to take it one day at a time.”
A “literal miracle”
Ezzie is now a year and a half old and is hitting all her milestones.
“She started walking at 11 months,” said Hillary. “She’s a literal miracle.”
In fact, she’s doing so well that she doesn’t have to come back to see Dr. Ruge for a whole year. “We’ve never gone more than six months without an appointment, so this is huge!”
Spreading the news and giving hope
To keep family and friends informed about Ezzie’s journey, Hillary started a blog.
“The blog gained more of a following than we expected. Pretty soon, it had 30,000 views. So, we decided to turn it into something even better: a benefit to help others in similar situations,” said Hillary. “We donated the proceeds to help families at Advocate Children’s Hospital who need financial assistance. We want others to be able to support their children the way we were able to support Ezzie.”
Hillary is extremely grateful for Ezzie’s care team.
“I can’t come up with enough kind words about Dr. Ruge and his whole team. So many things could’ve gone wrong. They saved her life and her quality of life,” she said. “It’s traumatizing not knowing if your baby will make it. They were all so kind, gracious and caring through the entire experience.”
How you can help
If you’d like to support families in need at Advocate Children’s Hospital, please contact Emily Vernon at 630-929-6906 or email@example.com.