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Archie’s resilient heart: A story of courage, hope and expert care at Manning Family Children’s

Archie’s resilient heart: A story of courage, hope and expert care at Manning Family Children’s

For Spencer and Tiffany Smith, the dream of expanding their family seemed out of reach for many years.  

After the heartbreak of losing their first child, they found joy in welcoming their daughter, Abbie, in 2009. However, the years that followed were filled with challenges and heartache as they spent over a decade trying for another child. Despite the obstacles, they never lost hope. 

In November 2020, their prayers were answered—they were expecting a baby they would name Archie. Little did they know that this pregnancy would take them on a journey filled with courage and resilience. 

A high-risk pregnancy full of uncertainty 

The Smiths’ joy turned to concern during Tiffany’s 20-week anatomy scan when doctors noticed abnormalities with Archie’s heart and right arm. Referred to a specialist in Mobile, Alabama, they learned their son’s heart had an underdeveloped right side—a condition known as Hypoplastic Right Heart Syndrome (HRHS). They also discovered Archie’s right upper arm hadn’t formed completely. One doctor recommended terminating the pregnancy and trying again, but the Smiths stood firm in their resolve.  

“After trying for so many years, we knew Archie was our blessing,” said Spencer. “We said, ‘If he gets here and the Lord takes him, then that’s how it will be. But we’re going to fight for him first.’” 

Their decision led them to specialists in Birmingham, Alabama, who provided more hope than the initial prognosis. Tiffany began seeing maternal-fetal medicine specialists weekly to monitor Archie’s heart condition. Despite the challenges, the Smiths remained optimistic as they prepared to meet their son. 

Welcome to the world, Archie 

Archie was born via C-section at 35 weeks and 5 days at a hospital in Birmingham. Despite his complex heart anatomy, his arrival was a joyful moment for the family.  

“He was perfect and an absolute fighter from the beginning,” Spencer shares. 

Archie faced significant challenges from the start. He was diagnosed with tricuspid atresia, a condition where the tricuspid valve is missing, which obstructs blood flow from the right atrium to the right ventricle. In addition, he had an atrial septal defect, a hole between the upper chambers of the heart that allows blood to mix. He also had a ventricular septal defect, a similar issue between the lower chambers. Despite these obstacles, Archie defied the odds early on, showing incredible resilience. 

Archie’s heart function was stable enough that doctors delayed his first open-heart surgery and waited until he was six months old for the Glenn procedure. After spending two weeks in the neonatal intensive care unit (NICU), the Smiths brought their son home to Mississippi with an NG tube to assist with feeding. 

However, their relief was short-lived. 

A new challenge: Diagnosed with NEC 

Shortly after coming home, Archie began experiencing concerning symptoms, including vomiting and blood in his stool. His pediatrician in Mississippi promptly referred him to Manning Family Children's, where he was admitted to the Heart Center’s Cardiac Intensive Care Unit (CICU) due to his heart condition. There, a specialized care team diagnosed and treated him for necrotizing enterocolitis (NEC), a serious intestinal condition that primarily affects premature infants. It occurs when the intestinal tissue becomes inflamed, leading to damage or, in severe cases, the death of the tissue. This can cause complications like infection or intestinal perforation, making timely diagnosis and treatment critical. 

Following his NEC diagnosis, Archie’s care team at Children’s stopped his feedings to give his intestines time to rest and heal to prevent further damage and avoid the need for surgery. During this time, Archie received IV fluids to provide hydration and nutrients while his digestive system recovered. 

“From the moment my wife and I walked through the doors, we felt an overwhelming sense of reassurance and trust," said Spencer. "We instantly knew we were in the right place, surrounded by people who genuinely cared about our child and had the knowledge to make a difference." 

After two weeks in the hospital, Archie was discharged, but his symptoms returned just a week later. 

The Smiths rushed him back to Manning Family Children’s, where he was treated for NEC again. Archie began to recover with a change in infant formula and continued monitoring of his condition. 

Archie’s first open-heart surgery 

For the next few months, Archie was closely monitored by the cardiology team at Children’s.  

The family leaned heavily on the hospital’s heart monitoring team, particularly Stephanie and Lynn, who provided constant support and reassurance. “They were always just a call or text away,” said Spencer.  

At just six months old, Archie underwent his first open-heart surgery, the Glenn procedure, performed by Timothy Pettitt, MD, surgical director of the Congenital Heart Program at Children’s Hospital. This critical procedure rerouted blood flow directly to Archie’s lungs, increasing the oxygen levels circulating throughout his body. It was a vital step to improve his heart’s efficiency and address the underdevelopment of its right side. 

The surgery was a success, and Archie’s recovery was remarkably quick. Five days after the procedure, doctors closed his chest, which had been left open temporarily to allow for swelling and to monitor his heart more closely during the critical early recovery period. “Nothing held him back,” recalls Spencer.  

When it was time to bring Archie home, the Smiths felt a mix of excitement and apprehension about leaving the safety of the hospital. "Leaving the hospital was hard," they recalled. "The nurses and doctors were like our security blanket because he was getting the constant care he needed there. Once we were released, though, we came home and cherished every second with Archie. He was doing really well." 

Archie today 

Today, at 3 years old, Archie is thriving. Full of energy, he runs and plays like any other toddler. He regularly sees his pediatric cardiologist, James Krulisky, MD, at Manning Family Children’s for check-ups. 

His final surgery, the Fontan procedure, is planned for next year.  

Reflecting on their journey, the Smiths are deeply grateful for the care Archie received at Children’s. From the cardiology team to the CICU staff, the hospital became a source of hope during their darkest days. 

“Children’s gave Archie the chance to thrive,” the Smiths said. “We learned to trust the medical team and became our child’s biggest advocates.  It’s not the journey we wanted, but it’s the one we were given, and we’re thankful for it.” 

Archie’s journey inspired his dad, Spencer, to channel his emotions into music, writing a heartfelt song that captures his son’s resilience and strength. Through its lyrics, the Smiths celebrate Archie’s indomitable spirit and the profound impact he has had on their family: 

"They said he has half a heart but that’s just fine. 
He doesn’t need it whole to make this world shine. 
Now I’ve got him, He’s my little man. 
He’s been through a storm but here he stands. 
With a heart so strong and a smile so wide. 
He’s got half of a heart but he’s got all of mine. 
Archie is my rainbow, a blessing from above. 
He changed my world, filled it with love.” 

Archie’s story is a testament to the power of hope, resilience, and love, reminding us all that even in the face of adversity, it’s possible to shine brightly and inspire those around us. 

For more information about the Heart Center at Manning Family Children’s, visit https://www.manningchildrens.org/services/heart-center/