Linda and Clint Pilkinton, of Nashville, Tennessee, were excited to welcome a new addition to the family after learning they were expecting. Early on in the pregnancy, however, the couple learned that the new baby would change their lives forever.
Linda was 16 weeks pregnant with baby Luke when she and Clint learned that he has hypoplastic left heart syndrome, a rare congenital defect in which a part of the infant’s heart is underdeveloped or not there at all.
“I was in shock, awe and disbelief. I wanted to throw up,” Linda tells PEOPLE of the moment she learned her baby would have “half a heart” at birth.
She continues, “I was just hyperventilating and crying, ugly crying. I didn’t know how to contain it and I didn’t know what to do with my emotions.”
About one out of every 4,344 babies born in the U.S. each year is diagnosed with hypoplastic left heart syndrome, according to the Centers for Disease Control and Prevention. That is about 960 babies in the country each year.
Linda and Clint, who first shared their story with World of Broken Hearts and Love What Matters, learned that there was a chance Luke could die at birth, and if he survived, he’d likely need three open-heart surgeries. She says the heartbreaking news took a toll on her throughout the rest of the pregnancy.
“It was torture. I couldn’t function,” she tells PEOPLE. “I couldn’t think right. You feel numb. You feel terrified.”
She gave birth on Dec. 21, 2017, and spent just five minutes with Luke before doctors whisked him away. At only one week old, Luke underwent the first of three heart surgeries in a procedure that took nearly 12 hours.
Linda spent that time in the waiting room feeling “helpless and hopeless” she tells PEOPLE.
“When it was done, we were all rejoicing. I exhaled,” she adds. “I was thrilled that he survived, that he made it. We were thankful for that huge milestone to be behind us.”
Linda was able to take Luke home in March, where he stayed before undergoing his second surgery earlier this month. Doctors performed a Bi-directional Glenn Shunt procedure to restore proper blood flow to the baby’s lungs.
Linda says that although she is relieved the procedure went well, it was difficult to see her son go through such invasive operations.
“I thought, I just handed him over to be ripped apart,” she says.
Now, with Luke back home, Linda says he’ll likely endure a third open-heart surgery when he’s at least 3 years old. Still, despite the plan, she and Clint are unsure of their son’s future.
“This has made me more present. I live in the moment more. That’s the only way you can live,” she tells PEOPLE. “I don’t know what’s in store… and that’s terrifying. You’re scared to love so hard and have it be ripped away from you.”