At the 21-week anatomy scan, doctors discovered that something was wrong with the baby girl’s heart and initially suspected possible spina bifida. Wanting a second opinion, her mother requested a referral to UMMC Maternal-Fetal Medicine. There, specialists confirmed a diagnosis of Complete Balanced AV Canal Defect, and no abnormalities were found in her spine.

From that point forward, the family traveled weekly to UMMC for close monitoring throughout the remainder of the pregnancy. While they knew a NICU stay would be necessary after birth, they did not know how long it would last.

She was delivered by induction at 37 weeks and 1 day on October 27, 2025. Immediately after birth, she required CPAP support to help her breathe. Following delivery, doctors identified additional medical conditions, including a small jaw, which causes her tongue to fall back and obstruct her airway, a cleft palate, a deletion of chromosome 9, and a duplication of chromosome 2. Due to these diagnoses, she may experience delays in growth, speech, crawling, and walking.

At approximately six weeks old, she became ill and began retaining fluid. Imaging revealed that her heart was pumping fluid into her lungs, leading to fluid buildup. To stabilize her condition and ensure her safety, she was placed on a ventilator. She is now on diuretics twice daily to help manage the fluid retention.

After two airway scopes showed no structural abnormalities, doctors determined that jaw surgery was the best course of action. On December 22, 2025, she will undergo surgery to move her jaw forward to prevent her tongue from blocking her airway. During this same procedure, a G-tube will also be placed to assist with feeding.

Looking ahead, she will require open-heart surgery around six months of age, followed by cleft palate repair between nine and twelve months.

This family is facing an overwhelming medical journey filled with uncertainty, emotional strain, and mounting financial challenges. Any support through donations, prayers, or sharing their story means more than words can express as they continue to fight for their daughter’s health and future.