1 in 4,000-7,000
Live births where omphalocele occurs
Cedar Rapids Kid Captain thriving years after ‘scary’ start
Amber and Rob Sebastian knew that raising twin girls would be double the fun and double the challenge. What they didn’t expect was for one of the girls to be born with a rare condition that — for a premature baby — was life-threatening.
Born prematurely with her twin sister, Lily Sebastian spent nearly the first year of her life at University of Iowa Health Care Stead Family Children’s Hospital. Her parents credit Lily’s care team with keeping her alive.
“We had top-notch care in the NICU from the moment the girls were born,” says Amber Sebastian, Lily’s mother. “We fully believe we might not have both of our girls if we hadn't had the excellent care that Stead Family Children's Hospital provided.”
That level of care would be essential as the young girl, weighing just 2 pounds, 4 ounces at birth, would need to be resuscitated on more than one occasion when she stopped breathing.
It was a harrowing start for Lily, but thanks to a loving family and a dedicated care team, the sixth Kid Captain of the 2025 season continues to thrive.
Surgery at one-day old
Amber Sebastian learned when she was pregnant that Lily had giant omphalocele, a rare birth defect in which a baby’s abdominal organs protrude outside of the body within a sac-like membrane.
Omphalocele happens early in pregnancy when the abdominal wall fails to form normally. The condition occurs in just 1 in 4,000-7,000 live births. A small omphalocele contains only bowel, while a “giant” omphalocele, which Lily had, contains most of the liver and other abdominal organs.
The family’s local doctor referred the couple to Stead Family Children's Hospital, where Lily and her sister, Gemma, were born early, at 31 ½ weeks.
Lily had her first surgery just one day later to begin a staged process of repairing her abdomen. The neonatal intensive care unit (NICU) team also carefully monitored her breathing, and Lily underwent a tracheotomy to help her breathe.
“Lily was a very sick NICU baby,” her mother says. “She almost gave up a few times, but the team did not let her. The doctors kept Lily alive.”
Care team offers balance
Her twin sister went home after five weeks in the NICU, leading to difficult decisions for their parents on how to divide their time between home and the hospital.
“It was hard,” Amber Sebastian says of the months that Lily spent in the hospital while Gemma was at home, along with the couple’s then-4-year-old son. ”The nurses really became family. They kept us informed and never made us feel guilty when we couldn't be there.”
One time, when the couple returned to the hospital, Lily’s health care team was resuscitating her.
“She coded a few times,” Lily’s mother says of the terrifying occasions when they worried their daughter might not survive. “She had to be resuscitated a few times. I think her body was always working against herself, but she’s definitely a fighter.”
Life beyond the first year
Lily was finally discharged after spending 299 days, about 10 months, in the hospital. She came home with a nasogastric (NG) feeding tube and was hooked up to a ventilator. Still a very small baby, Lily’s parents watched the machine every night to monitor her breathing.
Over time, they continued to return to Stead Family Children's Hospital to address other health care needs.
Lily also was diagnosed with aortic root dilation, an enlarged area in the first section of the aorta – the body’s largest blood vessel – and chronic kidney disease, among other health issues.
“When Lily came home and then had to be hospitalized, we would only take her to UI Health Care,” Amber Sebastian says. “They knew her. They knew her complications. For her, we felt there was no other choice.”
Graeme Pitcher, MD, the same surgeon who performed the operation to repair Lily’s abdomen as a newborn, completed the staged approach five years later with a final surgery.
Lily received skin and wound repair following surgery to help with the healing process.
"I’m forever thankful and grateful that we never doubted anything that was told to us there. We totally just trusted them."
Amber Sebastian
Lily’s Mom
Appreciating health care partnership
Initially a cause for concern, Lily's lungs seem to have fully developed and have not been an issue. She even completed a 10-mile bicycle ride with her classmates.
“She does have some heart issues that don’t seem to impact her life right now,” Amber Sebastian adds, describing Lily’s personality as “funny, sweet, and kind.”
Now 12 and in seventh grade, the Cedar Rapids girl loves music, plays the piano and trumpet, and enjoys going to the park to ride her bike. Lily has shared her story at Dance Marathon events around eastern Iowa.
“Nothing in life has been easy for her. She always works hard for everything she can do,” Amber says. “She doesn’t dwell on it; she just keeps going.”
Lily’s parents say they’re grateful for the partnership they’ve experienced with her wide-spread health care team, spanning from dietitians to psychiatry.
“From the beginning, they’ve worked together and with us, at first for survival, and now, for what she needs to be successful in life,” Amber says. “I’m forever thankful and grateful that we never doubted anything that was told to us there. We totally just trusted them. I didn’t have time to not trust. It was scary, yes, but I never doubted.”
Photos from Kids Day 2025
Kid Captain Hall of Fame
Each football season, we welcome 12 unforgettable patients into our Kid Captain Hall of Fame. Explore our four most recent stories.
Meet Kid Captain Jaxton Engstrom
Facing rare Batten disease, Waterloo teen Jaxton receives lifesaving, multidisciplinary care from specialists at UI Health Care Stead Family Children’s Hospital.
Meet Kid Captain Liam Bartleson
Liam’s journey at UI Stead Family Children’s Hospital went from life-threatening newborn seizures to hope through innovative treatments for his rare epilepsy.
Meet Kid Captain Gwendolyn Clouse
Diagnosed as a baby with a rare disorder, Gwendolyn Clouse has defied the odds with expert care from UI Stead Family Children’s Hospital.
Meet Kid Captain James Hall
James’s earache turned out to be something far more serious, launching a complex medical journey at Stead Family.
Patient Stories
