Hero - Alfonsina

That three-year old Joseph Maxwell Steiner has recovered to near normalcy from a devastating birth defect is a testament in part to the effectiveness of early intervention and therapy he received from the Children’s Diagnostic & Treatment Center (CDTC).

As soon as he was born in March 2020, his mother, Tehilla, knew something was wrong with little “JoJo,” whose protruding forehead hadn’t shown up on any ultrasounds during her pregnancy.  Nor had prenatal testing revealed any genetic abnormalities.

A children’s doctor herself, Tehilla was determined to be heard.  Just two weeks after he was born, she took JoJo back to his neonatologist, where he was finally diagnosed with sagittal craniosynostosis, a birth defect in which the bones in a baby’s skull join before its brain is fully formed.  

In JoJo’s case, his sagittal suture (which runs along the top of every baby’s head, from the soft spot near the front of the head to the back of the head) had closed too early, forcing his head to grow long and narrow (known as scaphocephaly).  If JoJo didn’t undergo cranial vault remodeling surgery soon, his skull would become more and more misshapen as he grew, which would add substantial complexity to the operation he already desperately needed.

Adding to the terrifying urgency, COVID was spreading throughout the United States.  JoJo was scheduled for surgery when the disease struck the entire Steiner household.  Tehilla and her son checked into a hotel while JoJo tested positive for 12 weeks, during which he underwent the risky two-hour operation to remove extra bone from his head. 

Afterward, he was fitted with a special helmet he wore nearly 23 hours a day to help his skull continue to form properly.  And yet he still couldn’t lift his head or achieve other normal baby milestones.

Agonized, Tehilla reached out to Jill Gelman, her CDTC service coordinator who had previously been invaluable in helping her third child navigate a speech impediment.  The ensuing CDTC evaluation determined JoJo was very developmentally delayed and qualified for physical therapy. 

“Dawn, his CDTC therapist, not only got him to pick up his head, she helped him crawl and ultimately walk,” Tehilla said.  

During that time, it was also discovered that JoJo was deaf in his left ear.  At age two, he had another surgery to place insert ear tubes.  Miraculously, he began to talk just a week after the surgery.

Soon, JoJo met all his developmental milestones, graduating out of therapy and is happily enrolled in Nursery 2.  His head now looks perfectly normal.  He’s also a prolific speaker with a warm personality and evident sense of humor.

“Early intervention is key for children,” Tehilla noted.  “The longer you wait, the harder it is to fix their problems.  I want parents who need this kind of help to know that it’s available at the CDTC for all who live in Broward County.”

Nominated by Jill Gelman, Service Coordinator

About our Hero of the Month

Each month, CDTC staff nominate one of our children as our  Hero of the Month. These special boys and girls are heroes in our eyes. They show strength, perseverance, determination and a positive outlook while facing great challenges.

Their stories are powerful and heartwarming and reflect the impact CDTC and you, our community, has on their daily lives.

A trip to our Clinic is more than just a doctor’s visit to a child with special healthcare needs.

But, insurance doesn’t cover everything. That’s why your gift is so important.