Baby diagnosed with rare liver disease

Published 4:20 am Tuesday, November 9, 2010

By By EDWIN MODLIN II
edwin.modlin@wdnweb.com
Staff Writer

A baby girl is in need of a liver transplant after being diagnosed with a rare and serious disease.
Melissa Elks is the mother of 16-month-old Chloe Alligood, who needs the liver transplant, and said she has been diagnosed with progressive familial intrahepatic cholestasis (PFIC).
PFIC is a class of chronic cholestasis disorders that begin in infancy and usually progress to cirrhosis within the first decade of life.
“It’s genetic, not hereditary,” Elks said. “Both her father and I have had the abnormal gene. And if both parents have the gene, it will go on to the child.”
However, Elks added, the chance of both parents having the abnormal gene is extremely rare.
Elks said one of the effects of the liver disease is chronic itching and scratching, which Chloe is doing constantly.
“She was born very healthy,” Elks said. “But when she was about 3 months old, we started noticing she was scratching herself.”
It wasn’t until Chloe was 5 months old that the scratching became more intense and Elks took her to the doctors to find out what was wrong with her baby.
Elks said Chloe was scratching herself so much she was bleeding. She tried medicated lotions to soothe the skin. However, it wasn’t until they took Chloe to the doctors again that they noticed her eyes were yellow and doctors tested her and noticed her liver enzymes were very high.
After having admitted Chloe to the hospital, doctors at Pitt County Memorial Hospital said she had PFIC. Although Elks wanted a second opinion and took Chloe to Duke University Medical Center, where doctors there diagnosed her with PFIC as well.
“We found out that the average age of onset for PFIC is three months,” she said, “although some patients don’t develop jaundice until later, even as late as adolescence.”
PFIC can progress rapidly and cause cirrhosis during infancy or may progress relatively slowly with minimal scarring well into adolescence. Few patients have survived into the third decade of life without treatment.
For Chloe, her liver is at a slowly deteriorating stage and will eventually shut down.
There are three types of PFIC, and Chloe has been diagnosed with Type 1 PFIC.
According to www.pfic.org, all forms of PFIC are lethal in childhood unless treated. They can be rapidly progressive and result in cirrhosis during infancy, or they may progress relatively slowly well into adolescence and cause minimal scarring. Few patients have survived into the third decade of life without treatment.
“She’s had both (doctor-recommended) surgeries and neither one has helped,” Elks said. “It’s a very rare disease and it’s causing her liver to shut down and be backed up with bile, which is causing her to itch and scratch all the time.
“She’s a very happy and lively child during the day. The night time is when it is the worst for her.”
Although Chloe is on a list for a liver donor, the liver has to match her blood type as well — something Melissa Elks and her husband are praying for every day.
“She’s such a happy little child and her lively spirit is so amazing,” Elks said. “And with a new liver, the itching will stop.”
Elks and her family and friends have put containers in various businesses around town to help raise money for the transplant, as it is very expensive.
Checks can be made to Chloe Allligood Liver Transplant Fund at State Employees Credit Union, Attn: Debbie Woolard, P.O. Box 307, Washington, NC 27889.