Heart's Triumph: Boone's Journey through Hypoplastic Left Heart Syndrome and the Lifesaving Efforts of a Dedicated Hospital Team

The story of a young boy named Boone begins with his mother attending what she thought would be a normal ultrasound while being 20 weeks pregnant with Boone. A few days later, they learned that Boone had hypoplastic left heart syndrome. This is a birth defect where the left side of the heart does not form correctly while a baby is developing during pregnancy. This birth defect affects normal blood flow through the heart, meaning they had to operate on almost half a heart, which leads to a lower chance of survival. Only about 20% to 60% of babies will survive their first year of life, and their survival rate for the next 15 years after that is about 40%. About 1,025 babies in the U.S. are born with it each year. 

Image Credit: Nucleus Medical Media

Beginning to treat hypoplastic left heart syndrome

Babies with hypoplastic left heart syndrome often require three separate surgeries that re-work the heart to optimize the most blood flow possible. The first operation, called the Norwood, is the most complex and is typically performed within the first two weeks of the child’s life. It is so complex that about 15 percent of babies do not survive the operation. Glenn Procedure often occurs around six months of age; Fontan Procedure often occurs in 3 to 4 years of a child’s life.

On the fifth day of Boone’s life, he had an eight hour surgery to begin re-working his heart. Once Boone turned 5 months old, Boone had to undergo the second heart surgery. 

The Hospital Team’s Effort

Even after and in between surgeries, the trusted hospital team helped Boone live in many ways, one being their interstage home monitoring program. Dr. Hoyme explains "Our interstage home monitoring program helps families like Boone's stay in close contact with us should any potential warning signs emerge. Our goal is for these babies to arrive for their second surgery as healthy and safe as possible." 

The reason Boone and many other children still get to live is because of the amazing hospital staff around the world.

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