Meredith and David were expecting their fourth child when a routine 12-week fetal scan delivered shocking news: their developing baby had a sac of fluid on her back, through which you could see the spinal cord. Meredith's local OBGYN felt certain it was the beginnings of spina bifida, a rare congenital defect in which an area of the spinal column doesn’t form properly, leaving a section of the spinal cord and spinal nerves exposed through an opening in the back. 

“It’s rare to catch it so early, but the sac was big enough to be visible on an early scan,” Meredith says. Her local doctor immediately referred her to the Richard D. Wood Jr. Center for Fetal Diagnosis and Treatment at Children’s Hospital of Philadelphia.  

The sac on the baby's back was closed and not leaking spinal fluid into the amniotic sac. So doctors decided against in utero surgery and continued monitoring Meredith closely. At 34 weeks, the sac of fluid had grown so large it crowded out development on the baby’s entire upper left side. Their daughter, Zuri, was born via c-section at 37 weeks in the Garbose Family Special Delivery Unit. 

“When Zuri was delivered, the sac of spinal fluid on her back weighed two pounds – so large she could rest her head on it,” Meredith says. “I had doctors telling us that in 25 years of practice they’d never seen anything that big.” 

Zuri was in CHOP’s Newborn/Infant Intensive Care Unit (N/IICU) for 5 weeks. Her left lung was severely underdeveloped, and she was missing multiple ribs on her left side and part of her abdominal wall. At 2 weeks old, Gregory Heuer, MD, PhD, operated to release the spinal cord from its connection to the skin and close the sac on Zuri’s back. Dr. Heuer and others on the team believed Zuri actually had severe form of something called VACTERL association, a group of conditions that occur together. VACTERL is an acronym for the organs and systems affected: vertebrae, anus, cardiac, trachea, esophagus, renal (kidney), and limb differences. 

The spinal surgery was successful, and Zuri went home at 5 weeks old. She was doing “reasonably well,” says Meredith. At 5 months old, Zuri returned to CHOP to have surgery for her gastrointestinal system. The surgery went well, but she contracted the flu and because of her lung issues became very sick, spending nine months in the Pediatric Intensive Care Unit (PICU). “The flu can kill anyone,” Meredith says. “And it can certainly kill a 6-pound baby with one functional lung.” 

As part of VACTERL, Zuri has complete tracheal rings, which cause tracheal stenosis, the narrowing of the trachea (windpipe). Yet another surgery repaired her trachea – a complex procedure called a slide tracheoplasty performed by CHOP otolaryngologist Luv R. Javia, MD. That surgery was also successful, but because of Zuri’s lung disease and the weakness caused by flu infection and a prolonged PICU admission she still needed a tracheostomy, which opens a hole in the neck to insert a tube that provides an artificial airway and makes breathing easier. 

And soon it wasn’t just Zuri who needed care at CHOP. During Zuri’s stay in the PICU, in September 2024, Meredith and David received another devastating shock: their oldest child, Silas, was diagnosed with a brain tumor at age 7. Read Silas’s story here. 

Now 2 years old, Zuri has been through seven surgeries at CHOP – the most recent of which was to close an atrial septal defect, or hole in the wall separating the two chambers of the heart. “She is the strongest little warrior baby in the world,” says Meredith, with pride. 

Zuri still has the tracheostomy tube and uses a ventilator, although under the care of pulmonologist Antoinette Wannes Daou, MD, she can spend short periods off of it to breathe on her own. More surgeries are on the horizon: to give her ribs support, reconstruct her abdominal wall and address her scoliosis, while weaning her ventilatory support as she gets stronger. 

For now, Zuri is a happy, smart, determined toddler who Meredith says is “hitting milestone after milestone, even if they are delayed.“ And mom remains grateful for CHOP’s multidisciplinary expertise in treating an extremely complicated case such as Zuri’s.

“She’s very scary on paper,” Meredith says. “Many hospitals wouldn’t even touch a case like hers. But CHOP not only took her on, but all her specialists routinely came together to make sure the care plan addressed all of her needs. That level of attention has been amazing.”  

“I have no doubt that CHOP doctors saved Zuri’s life, multiple times,” Meredith says, tearing up. “And when the nurses and other caregivers who have traveled this journey with us over months and months see how far Zuri has come, no one can believe it.”