Cameron’s parents learned early on that their newborn’s story would not unfold quietly. Born with Down syndrome and a rare, complex condition that left his esophagus disconnected, Cameron spent the first six months of his life at Children’s Hospital of Philadelphia (CHOP) facing challenges most babies never encounter.

Today, those early days feel worlds away. Now 2 years old, Cameron is home – smiling, growing and discovering his world one milestone at a time. His future, once filled with uncertainty, is now filled with hope. His family remains profoundly thankful to the CHOP team who made Cameron’s recovery possible.

Unexpected diagnosis

When Katherine and Craig learned they were expecting their second child, they were overjoyed. Early in the pregnancy, they learned their unborn baby would have Down syndrome, a common genetic condition caused by an extra copy of chromosome 21. They knew their child could thrive with love and support. 

In the eighth month of pregnancy, the couple received concerning news. Their baby had long-gap esophageal atresia, a serious birth defect in which the esophagus (the tube that carries food and liquids from the mouth to the stomach) does not form properly. Instead, it is split into two segments that are too far apart to be easily reconnected.  

Their baby would need immediate intervention at birth to receive nutrition, followed by a staged reconstruction to permanently repair the defect.  

Referral to CHOP

With the baby’s health on the line, Katherine’s obstetrician referred the family to CHOP’s Richard D. Wood Jr. Center for Fetal Diagnosis and Treatment.

In January 2024, the couple met with Alan W. Flake, MD, FACS, FAAP, a pediatric and fetal surgeon with expertise in treating babies with complex birth defects. Dr. Flake examined Katherine and her unborn son, reviewed imaging and test results, and walked the family through what to expect before, during and after delivery. 

Cameron would be born at CHOP’s Garbose Family Special Delivery Unit, the world’s first birth facility in a pediatric hospital specifically designed for mothers carrying babies with birth defects. The unit allows mothers and babies to remain close while both receive highly specialized care.  

On Jan. 29, 2024, Cameron was born by C-section weighing 5 pounds, 5 ounces. Soon after, Dr. Flake performed a gastrostomy to place a feeding tube (G tube) directly into Cameron’s stomach, ensuring he could receive the nutrition he needed to grow.  

Following surgery, Cameron was admitted to the Harriet and Ronald Lassin Newborn/Infant Intensive Care Unit (N/IICU), where a dedicated team closely monitored his condition and supported his growth as his family settled into daily bedside visits and ongoing updates.  

“It was a scary time,” Katherine said. “But we trusted his team. They explained what to expect, answered all our questions and treated Cameron like he was their own.” 

Thankfully, the family was able to stay nearby in the Ronald McDonald House for the duration of Cameron’s hospital stay. Katherine and her mom stayed fulltime; while Craig and their older son, Calton, visited as much as possible. 

Rare and complex surgical path for esophageal atresia

As weeks passed, Cameron’s parents learned just how complex repairing his esophagus would be. The gap between the two segments of his esophagus was too large for a single operation. Cameron would need time to grow stronger and a carefully planned, staged approach.  

Guided by a team experienced in treating rare esophageal conditions, the family moved forward with the Foker process, a specialized repair technique. Cameron was referred to Thomas E. Hamilton, MD, an attending pediatric surgeon and co-director of the Esophageal and Airway Treatment (EAT) Program and Duy T. Dao, MD, MPH, an attending surgeon with expertise in esophageal atresia repair.  

The EAT Program offers advanced care and treatment for children with complex esophageal and airway conditions, working across specialties to provide children with the personalized care they need.

Timing was critical. Cameron needed to reach 10 pounds before surgery. By April, when Cameron was 3 months old, he was ready.   

During the 7½ hour procedure, Dr. Hamilton and Dr. Dao worked closely together to place sutures near the ends of both esophageal segments. The sutures were passed through Cameron’s chest, crossed and tied on the outside of his back, allowing gentle tension to encourage growth. (See Foker process illustrations.) 

After surgery, Cameron remained sedated, intubated and paralyzed in the N/IICU. Every other day, doctors carefully adjusted the sutures, using imaging to check progress as the two ends of the esophagus slowly moved closer together.  

For Cameron’s family, this was one of the most difficult stretches of his journey – a period defined by waiting, watching and holding onto hope. They prepared for weeks of tension adjustments. Instead, after just 10 days, Cameron was ready for the second stage. 

During the 4-hour follow-up surgery, the two ends of Cameron’s esophagus were successfully connected by Drs. Dao and Hamilton, creating a continuous passage from mouth to stomach for the first time. 

Recovery from Foker procedure takes time

Cameron’s recovery unfolded slowly. He remained sedated and intubated as his care team closely monitored healing and gradually reduced medications. For his parents, it was another stretch of quiet vigilance and measured progress.  

“Even after the surgery, it wasn’t instant relief,” Katherine said. “We learned to take things day by day, sometimes minute by minute.”  

A pivotal moment when Cameron woke up – and swallowed on his own for the first time. It wasn’t food, just saliva, but it meant his body was beginning to function without constant suctioning.  

“That was the moment we knew his body was finally doing what it was meant to,” Katherine said.  

Soon after, Cameron’s breathing support was removed. He became more alert and responsive as his world slowly expanded.

Before discharge, CHOP staff taught Cameron’s family how to manage his feeds, recognize his unspoken cues, and care for him at home. To best support Cameron’s growth, the doctors transitioned his feeding from a G tube to a gastro-jejunal (GJ) tube.

In July 2024, Cameron was discharged from the hospital. 

Continuing medical journey 

Bringing Cameron home was both joyful and daunting. After months in the hospital, his parents embraced quieter days: holding him without wires, watching him bond with his older brother Calton, and settle into family life.

Feeding, however, remained challenging. Despite the successful repair, Cameron struggled to tolerate nutrition and often vomited after feeds. Patients with long-gap esophageal atresia require intense surveillance and proactive dilation of the newly joined section of esophagus to ensure it remains open and functional. Cameron’s care was transitioned to Michael A. Manfredi, MD, a pediatric gastroenterologist and co-director of the EAT Program, who provided diligent monitoring and addressed new issues as they arose.

In early 2026, Cameron experienced some challenges with his feedings. Dr. Manfredi recommended additional surgery for Cameron to repair a hernia, transition back to a G tube for feedings and a fundoplication to help the toddler’s esophagus and stomach function together more effectively.

Throughout it all, Cameron’s family remained closely connected to the specialists who knew him best – often reaching out with concerns, returning for follow-up visits, and trusting the team that continued to walk alongside them long after discharge. 

“We are eternally grateful to all the NICU nurses and the entire EAT team,” Katherine said. “Without them, our Cami wouldn’t be as well taken care of and growing amazingly as he is.”

Finding joy

Today, Cameron’s days are filled with small joys that once felt far away. He loves bright lights and music, eagerly reaches for his favorite toys, and delights in time with family. He’s learning and growing at his own pace, exploring textures, opening his mouth for a spoon, and soaking in the world around him with curiosity.

When Cameron’s family looks ahead, they only see possibility.

“Everything happens on Cami’s timeline and that’s OK,” Katherine said. “Our focus is helping him grow, feel loved and find joy as he discovers the world in his own way.”