Mile 74

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. 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).

Madilyn Dicarlo, whom they lovingly called “Maddie,” weighed just 4 pounds, 13 ounces at birth, born on November 9, 2023. Maddie was urgently transferred to Manning Family Children’s, where she was admitted to their Level IV NICU for the highest level of care available in the region. She spent the next two and half months in critical care, sedated and on an oscillator, a device used to support breathing and function in place of her lungs. 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.  Indeed, her recovery and progress has astounded the entire medical team. Maddie truly is a miracle baby.

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.  On December 13, 2023, Dr. Jessica Zagory, a pediatric surgeon at Manning Family Children’s, 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.  Over the next few months, Maddie continued to fight for her life with the support the neonatology team. On January 8, 2024, Maddie underwent heart surgery in the catheterization lab to repair her PDA. In July 2024, Maddie received surgery to repair her VSD and Double Outlet Right Ventricle. They got to return home in September but were re-admitted when Maddie came down with a virus in March 2025. Since September 2024, Madilyn has undergone three hear surgeries, been on ECMO due to heart failure, and received a trach in December 2024. She has a long journey ahead, but her family is happy to have her home and stable!