Amara Lee Robinson of Scipio was diagnosed with heterotaxy syndrome. A benefit event is planned in September.
SCIPIO — Amara Lee Robinson was born three weeks early at a women’s health clinic in Indianapolis.
Her mother, Patricia Robinson, originally was scheduled for a cesarean section on Jan. 13, 2022. Amara already was known to have inner organ problems. At time of birth, tests were performed to be 100% sure of her condition.
She was found to have situs inversus abdominalis, which is a mirroring liver and stomach. Her stomach is near her heart, and her liver is on the right side of her body, Patricia said.
“She has interrupted inferior vena cava, so she can’t receive catheter through groin,” her mother said. “She has a tricuspid aortic valve, meaning instead of three chambers in the aortic, there are two partially fused and one normal chamber. This usually leads to needing an aortic valve replacement.”
Amara’s intestines formed malrotated, and her spleen is there but does not work properly. She takes amoxicillin daily and will continue to do so until at least age 5.
“The overall diagnosis for these conditions is known as heterotaxy syndrome,” Patricia said. “She spent all four days after birth in the Peyton Manning Children’s Hospital NICU unit. She was on machines and monitors the whole time until Day 3 when they began to see if she could go without them. Blessed we brought her home on Day 4.”
A few weeks later, however, Patricia found out insurance denied three of the four days her daughter spent in the neonatal intensive care unit.
“We fought this with hospital’s help and were still denied,” said Patricia, who grew up in Seymour and current lives in Scipio in Jennings County.
A benefit event to raise awareness of heterotaxy syndrome and raise money to help cover Amara’s medical bills has been set for 2:30 to 5:30 p.m. Sept. 9 at Harmony Park next to The Brooklyn Pizza Co. and The Seymour Brewing Co., 753 W. Second St., Seymour.
There will be a silent auction, a fenced-in area for kids to play, a 50/50 raffle, cornhole, a bake sale and live music by local band Paradigm. Donations are being accepted for the bake sale.
The public is invited to attend.
For information about the event or to donate an item for the bake sale, contact Patricia at 812-718-1705.
