Lenore Cameron founded a national congenital heart disease (CHD) support organization called Little Hearts, Inc., following her own son's battle with HLHS. Cameron stressed the importance of pre-natal screening and diagnosis.
"Some of these kids will go home and crash and die in their house," Cameron said. "These parents never had the opportunity of giving their child the chance. That's very important. You have to have a plan."
These days, more hospitals are performing the Norwood procedure -- but not all institutions are equipped to handle the specialized surgeries required.
"When a parent comes to us and they're diagnosed in utero, I ask them, 'Have you asked to see what their success rate is and how many they do in a calendar year?'" said Cameron. "If something goes wrong, they will always regret that they didn't research, or that they weren't given that as an opportunity."
For Jake and Renee Peerless, Children's Hospital Boston was the best hope for a future for their son, Sam.
With a team of specialists in place, Renee was focused on getting her husband home for Sam's birth and first surgery.
With the military's help, Jake was granted temporary leave and was reunited with his wife just days before his son was born in April 2009.
"It's a lot emotionally on me," said Jake. "From everything from coming back home to being with Renee for the first time in nine months to seeing Sam's condition. It is tough."
Now, more than a year after he was born, Sam has been through two of the three corrective surgeries on his heart.
The Peerlesses said it's been a tough journey for their family. Jake was redeployed to Iraq shortly following Sam's first surgery. Since then he has been reassigned to be with his wife and son in Massachusetts.
While Sam continues to do well, his road to recovery has not been free of bumps.
"With this disease, it's a journey," said Dr. Bacha "You have to have an excellent result at each step for them to enjoy a good quality of life.
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