Diagnosed with Multiple Congenital Conditions, Madilyn Defies All Odds at Children’s Hospital New Orleans

When Christa and Justin Dicarlo of Franklinton, Louisiana, learned they would be adding a baby girl to their family of 4, the couple was thrilled. Because their previous two pregnancies and deliveries had been straightforward and without any complications, they expected the same for their third.  

During Christa’s 20-week anatomy scan, her OB-GYN discovered a concerning abnormality: her baby had a two-vessel umbilical cord, instead of the normal three. This condition, which involves only one vein and one artery in the cord, can be a sign of developmental problems, as a typical umbilical cord has two arteries and one vein to transport nutrients to the baby and waste back to the placenta. 

Christa’s doctor recommended further testing by a maternal-fetal medicine specialist who discovered their baby had not one, but two, serious congenital heart defects: a Double Outlet Right Ventricle and a large Ventricular Septal Defect (VSD). Double Outlet Right Ventricle is a rare heart condition where both major arteries of the heart are connected to the right ventricle. VSD involves a hole in the heart's lower chamber wall. Both conditions are associated with structural and developmental issues and would require surgery after birth. Their baby girl was also diagnosed with hypoplastic left lung, meaning it was severely underdeveloped.  

Christa’s pregnancy was suddenly classified as high-risk, and she was told to be prepared for the worst.  

“The outlook was not promising, but we refused to give up hope,” Christa said.  

After that, Christa saw her new maternal-fetal medicine specialist weekly. At around week 27, a routine scan revealed that her baby also had hydrops, a condition characterized by significant fluid accumulation around the baby's tissues and organs, leading to swelling. In her baby’s case, it was particularly severe around her heart and lungs.  

“We were repeatedly warned that the chances of our baby surviving until birth were low, and even if she did make it, survival after her birth was uncertain,” Christa said. “But I prayed constantly, and then suddenly, the hydrops went away.” 

At 34 weeks pregnant, in the early hours of November 9, 2023, Christa awoke to an unfamiliar pain. She initially mistook the sensation for Braxton-Hicks contractions, and she calmed herself in a warm bath. But the pain worsened, and she decided to go to her local emergency room. She insisted her husband stay home with their sleeping children and promised she would call with any updates.  

Upon her arrival at the hospital, however, Christa was told she was dilated and in labor, with signs of bleeding. She was transferred to another hospital, and soon both her mother and her husband were by her side. The rest of her labor was a blur, and by the time her water broke, it took just two pushes before Christa and Justin’s baby girl was born.  

Madilyn Dicarlo, whom they lovingly called “Maddie,” weighed just 4 pounds, 13 ounces. 

“I remember she didn’t cry at all when she was born, and I just lost it,” Christa said. “I kept calling out asking if my baby was okay.”  

When Maddie was born, she was in critical condition. In addition to her underdeveloped left lung and heart issues, she was also born with a congenital diaphragmatic hernia (CDH) on her right side. CDH happens when the diaphragm doesn't fully develop, leaving a gap that allows abdominal organs to move into the chest cavity, causing interference with lung and heart function.  

To complicate matters even further, Christa experienced a serious medical issue during delivery: her placenta ruptured, causing Maddie to inhale blood—a complication that endangered both of their lives.  

Maddie was urgently transferred to Children’s Hospital New Orleans, where she was admitted to their Level IV NICU for the highest level of care available in the region. Justin accompanied Maddie to New Orleans, while Christa recovered in the hospital.  

“Before they took Maddie to Children’s, they brought her by so I could meet her and she squeezed my finger,” Christa recalled. “She was in her little transport bed, and we could see just how tiny she was.”  

At Children’s Hospital New Orleans, Justin briefly saw their daughter alert before she was intubated. She then spent the next two and half months in critical care, sedated and on an oscillator, a device used to support her breathing and function in place of her lungs.  

The medical team was honest with Christa and Justin about Maddie’s chances of survival, but no one was willing to give up hope, and they continued to support her growth and development.  She faced ongoing challenges with her breathing, and her blood gas levels remained critically high. As she grew bigger and stronger, they began addressing her medical complications one-by-one.  

On December 13, 2023, Dr. Jessica Zagory, a pediatric surgeon at Children’s Hospital New Orleans, operated on Maddie to correct her diaphragmatic hernia. The procedure involved closing the large opening in the diaphragm by stitching a muscle flap to the diaphragm muscle itself. 

“We were terrified of our baby going into surgery, especially since she was still so small and weak, but Dr. Zagory was awesome,” Christa said.  

Over the next few months, Maddie continued to fight for her life with the support of her medical team at Children’s Hospital New Orleans, which included neonatologists Dr. Emily Masoumy, Dr. Lisa Barbiero, and Dr. Julie Gallois.  

On January 8, 2024, Maddie underwent heart surgery in the catheterization lab to repair her PDA. Her surgeons are waiting until Maddie is older before performing the surgery to repair her VSD and Double Outlet Right Ventricle, which are both major surgeries and risky to perform on a baby as young and tiny as Maddie.  

On January 12, Maddie was successfully extubated, and by February 16, she no longer needed supplemental oxygen.  

Finally, on February 29, Maddie was able to go home. 

“Maddie has surprised everybody,” Christa said. “She is truly a miracle baby.”  

Indeed, her recovery and progress has astounded the entire medical team. Remarkably, Maddie was able to go home without the need for a tracheostomy tube or supplemental oxygen, requiring only her G-tube to support feeding. She is growing stronger by the day, adored by her two older siblings, and doted on by her parents.  

“Everyone at Children’s was amazing—Maddie truly had a fan club there,” Christa said. “We are so grateful for the care they gave our daughter and for helping her defy the odds.”  

To learn more about the Level IV NICU at Children’s Hospital New Orleans, visit https://www.chnola.org/services/critical-care/neonatal-intensive-care/