Lily Sebastian was born a twin, two months early. After a typical five-week stay, her twin sister was discharged, ready to go home and take on life. Lily, however, remained in the hospital for 299 days.
Born with a “giant omphalocele”, a condition in which the abdominal organs develop outside of a baby’s stomach, Lily received her first surgery on day one.
Throughout those 299 days, Lily struggled to breathe. She struggled to survive. Her body was giving up, forcing a couple of resuscitations and an eventual tracheostomy, a surgical procedure opening the trachea and creating an alternate airway for breathing.
After about 10 months, Lily was released, able to enter her home for the first time in her life. She could take her first breath of fresh air outside. Meet her twin sister.
However, the struggle was not over.
Lily was still on a ventilator, the only difference being that it was in her own room instead of a hospital. She still had the trach and an added feeding tube.
Four years later, Lily was free from in-home nursing.
“Because we were at the University of Iowa, we had so much faith and trust in them,” Amber Sebastian, Lily’s mother, said. “And when we tell our story, looking back, it’s like, ‘oh my gosh, we did that.’”
Lily’s father, Rob Sebastian, agreed.
“Miss Lily is resilient and easy with everybody. A fighter, and just…” Rob began to choke up, taking a moment to look at his daughter, who sat to his right, staring up at him. “Just an all around good girl.”
Now 12 years old and in 7th grade, Lily still battles a chronic kidney disease and a heart condition, but is exceeding care expectations.
“She’s brave and she’s tough, and she’s super proud of her nurses, doctors and the hospital,” Amber said. “Through everything, we’ve seen her strength. She’s pretty happy and funny, and just takes life as it comes.”
Lily lives life to the fullest, running around outside and playing video games with her friends, who all know about her being a Kid Captain at Iowa.
At school, Lily hands out her Kid Captain cards, growing her support system, which has extended well-past her peers to the international scene.
“We’ve been mailing those trading cards all over, as far as Germany,” Amber said. “Lily has support from a lot of people that love her.”
“My grandparents, my auntie, my uncles, my cousins,” Lily listed.
Hundreds of people are in Lily’s corner, fighting alongside her in her journey.
With family ties to the University of Iowa, the Sebastian family holds a special place for the Stead Family Children’s Hospital in their hearts. Lily continues to be seen by several clinics, attending appointments when necessary.
“Her body almost gave up a few times and [the doctors] helped her come back,” Amber said. “But from in womb on, she continued and continues to fight through every obstacle. We are so proud of her.”