BOBÌåÓý

A life-changing diagnosis

Expecting a child is a time of joy, anticipation and excitement for most families. Gender reveal celebrations, nursery preparations and dreams of the future fill the hearts of expectant parents.

However, the emotions surrounding their pregnancy were different for Susan and her husband, William.

From the moment Susan found out she was pregnant, she was overjoyed. Then, during a routine prenatal appointment, their world was shaken. The doctor detected a heart abnormality in their unborn child and referred them to a specialist for further evaluation. Seemingly frozen in shock, Susan struggled to process the news.

For a second opinion, Susan and William were referred to Jennifer Co-Vu, MD, BOBÌåÓý’s pediatric cardiologist and director of the BOBÌåÓý Congenital Heart Center’s Fetal Cardiac Program and the Single Ventricle Program.

Hoping for reassurance, they were optimistic the visit would bring better news. However, when Dr. Co-Vu performed a detailed fetal echocardiogram, their fears were confirmed.

Their unborn daughter was diagnosed with hypoplastic left heart syndrome, or HLHS. This rare and life-threatening congenital heart defect affects 1 in 5,000 newborns, in which the heart’s left side is underdeveloped and can’t properly pump blood. That moment marked the beginning of an emotional journey � one filled with difficult decisions, unwavering faith and distinguished medical care.

Comprehensive care at BOBÌåÓý

Overwhelmed by the diagnosis, Susan withdrew emotionally. The weight of the decisions ahead felt insurmountable. However, she soon realized that rather than drowning in internet searches, she needed to trust experts. BOBÌåÓý, known for its comprehensive and team-based approach to congenital heart disease, became their refuge.

BOBÌåÓý takes a multidisciplinary approach to managing complex pregnancies affected by congenital heart disease. Dr. Co-Vu and her team specialize in early detection and prenatal counseling, along with a coordinated delivery and surgical plan, to ensure the best possible outcomes for both mother and baby.

“We work closely with maternal-fetal medicine specialists, neonatologists, cardiovascular surgeons and intensivists for each patient,� Dr. Co-Vu said. “From prenatal diagnosis to postnatal surgery and long-term follow-up, our goal is to provide seamless, family-centered care that ensures the best possible outcome.�

Susan took comfort in that approach and, summoning her strength, committed to doing everything in her power to give her daughter the best chance to survive.

She met with Mark Bleiweis, MD â€� a renowned congenital heart surgeon, director of the BOBÌåÓý Congenital Heart Center and chief of pediatric cardiovascular surgery at BOBÌåÓý Shands Children’s Hospital â€� and his team to prepare for Grace’s birth and subsequent surgeries.

Touring the congenital heart intensive care unit, or CHICU, was overwhelming, but the staff helped ease their fears.

“The staff saw our anxiety and did everything possible to make us feel comfortable and informed,� Susan said.

Grace’s arrival and surgeries

Susan delivered baby Grace at BOBÌåÓý, where a highly specialized medical team was ready to provide immediate care. Given the severity of her heart condition, Grace required a series of three open-heart surgeries to ensure survival and improve heart function.

• First Surgery (Norwood Procedure) â€� At just 11 days old, Grace underwent the Norwood procedure, the first stage of surgical repair for HLHS. This complex surgery reconstructs the aorta and establishes reliable blood flow to the body.

• Second Surgery (Glenn Procedure) â€� At 6 months old, Grace had the Glenn shunt procedure, which connects the superior vena cava â€� the major vein carrying deoxygenated blood from the upper body â€� directly to the pulmonary arteries. This step reduces the workload on the right ventricle and prepares for the final stage.
• Third Surgery (Fontan Procedure) â€� Shortly after her fourth birthday, Grace underwent the Fontan procedure, the last of the three surgeries. As Dr. Co-Vu describes it: “The Fontan procedure reroutes blood circulation so that oxygen-poor blood bypasses the heart and flows directly to the lungs. This allows the single functional ventricle to pump oxygen-rich blood to the body without being overloaded.â€�

Each surgery came with risks, but Grace was tough and made a remarkable recovery after each procedure.

A bright future

Today, Grace is 11 years old and full of energy and joy. She has exceeded developmental expectations, met every milestone, thrived in school and won academic awards. She enjoys riding horses, playing sports, dancing and traveling, activities her parents once feared might never be possible.

“When you look at Grace now, you’d never guess what she’s been through,� Susan said. “The only reminder is the scar down her chest, but to us, it’s a symbol of her strength.�

Grace may one day require a heart transplant, and her medical team at BOBÌåÓý remains committed to her lifelong care. For now, routine monitoring and a healthy lifestyle keep her strong.

A message of hope

Susan and William leaned on their faith through it all, believing hope and resilience would carry them forward.

“This journey has been exhausting, but it’s also been the most fulfilling experience of my life,â€� Susan said. “We are forever grateful to Dr. Bleiweis, Dr. Co-Vu and the entire BOBÌåÓý team for giving us the greatest gift of all. The gift of Grace.â€�

Susan said she hopes that by sharing their story, other families facing similar diagnoses will find the courage to press forward.

“Hope is the biggest factor,� she said. “Stories like ours should give you the strength to keep going.�