Cathy Gilbert/Clarendon Citizen
Struggle for a Baby Rutlee miracle
Every expectant parent hopes and prays for a perfect baby. Ten tiny toes and ten tiny fingers. And a body full of healthy organs.
Unfortunately, that isn’t always the case, and when that happens, families and friends close in the ranks to help support a family in crisis.
Such is certainly the case for the Dee and Jonathan Stegall family, whose son Rutlee was born with a rare liver disorder.
Mom Dee was scheduled for a planned Caesarean section, but ultrasound studies showed that Rutlee was on the small side. When he was delivered, he weighed just 4 pounds 12 ounces, which is small, but considered manageable.
But very shortly after his birth, he started experiencing blood sugar problems and became jaundiced, all symptomatic of liver problems.
“Many babies have jaundice,” explained Dee, a labor and delivery nurse at Clarendon Memorial Hospital. “Typically we use phototherapy lights and the jaundice peaks and begins to decrease. Rutlee’s never peaked.
Rutlee was soon transported to the Neonatal Intensive Care Unit at Palmetto Richland Hospital where scans revealed that Rutlee has a condition called biliary atresia.
Biliary atresia is a rare condition in newborn infants in which the common bile duct between the liver and the small intestine is blocked or absent. The cause of the condition is unknown. The only effective treatments are certain surgeries such as the Kasai procedure, or liver transplantation.
Rutlee underwent the Kasai procedure to create the missing duct work, but when he was discharged from the hospital 39 days later, the doctors feared the procedure was not working.
“We were sent home with a list of critical symptoms to look for,” said Jonathan. Those included irritability, failure to feed and an increase in jaundice.
The Stegalls said they were scared to death, and rightfully so. The only other option was a liver transplant and Rutlee would have to weigh 22 pounds to be eligible for that surgery.
“About a week after we got home, we got the best possible sign,” said Dee, slightly embarrassed. “I had to call my Mom to come look; we had a dirty diaper that had color!”
The Kasai procedure was working because that “color” meant that Rutlee’s liver was not only making bile, it was passing through to his intestines.
“I actually had to bring dirty diapers to the doctors, they were so unbelieving.”
Jonathan who doesn’t have a nurse’s sensibility said, “They take sticks and dig through it!”
No one has a medical explanation of why the procedure started working, but there are hundreds of community people who understand: prayer.
“We must be on every prayer list in the county,” said Dee who originally hails from Barrineau. Jonathan is from Turbeville.
“What this community has done for us is just amazing,” he said. “We have stacks of cards and letters. People have brought food and offered to do just about anything for us.”
Right now, doctors are encouraging the Stegalls to take things just one day at a time. Because the Kasai procedure is working, Rutlee is not on the transplant list. He will be eligible for what is called a “split liver” transplant, meaning he can receive a piece of a liver from a live donor, who must be a perfect match, under 50 years old and in excellent health. Rutlee also has a rare blood type – A negative – present in only about seven percent of the American population.
“We have had so many people offer to be tested, it has just been overwhelming,” Dee added.
What is also overwhelming are the expenses.
“Just one bill we got from Richland was for $148,000,” Jonathan said.
A transplant will cost between $400,000 to $750,000.
The next big fundraiser for the Stegall family will be “A Round for Rutlee,” this Saturday at Shannon Greens Golf Course. Play begins at 1 p.m. and will end around 6 p.m. A barbecue dinner will be available for sale for $5 after the tournament ends, which also gets you a seat to see a live performance by the band 12 Percent. So bring your lawn chair and help support the Stegall family.
For more information about the Rutlee benefit tournament, contact Brian Bean, tournament director, at aroundforerutlee@gmail.com or by calling (803) 565-6508.
