Rare disease affects little Sean

by T.L. Huffman

Sean Carter had been born five weeks premature and was jaundiced, but that was not uncommon in newborns. Still, his grandmother, Marquitta Brown, had her suspicions.

“He was jaundiced and then not,” she said. “He was so yellow, he shone.”

One day when she noticed his stomach was distended and his bowel movements were clay-like. The family physician sent them to Children’s Mercy Hospital where Sean was given a liver biopsy.

The test results suggested biliary atresia, a condition in which the bile ducts are damaged. Biliary atresia is a fairly rare disease that begins in early infancy. Unless bile flow could be established, Sean’s liver would gradually stop functioning.

The most common treatment is an operation called the Kasai procedure. Three-month-old Sean underwent the procedure in September. The damaged duct was removed and replaced with a new drainage system made from a piece of his small intestine.

In mid-October and again in January, Sean’s lab results showed infection. The procedure hadn’t worked.

By now the scarring in Sean’s liver, called cirrhosis, was severe and advanced. Cirrhosis is not reversible. There was only one option left for Sean – a liver transplant.

Sean was placed on the list as a transplant candidate in January. A transplant team worked to coordinate the transplant well before Sean reached end stage liver disease.

The only matching requirements for livers are that the donor and recipient must be about the same size and have compatible blood types.

“Doctors would accept a donor for Sean of a newborn or up to eight years old,” said Sean’s mother, Mindy.

Unfortunately, there are more patients who need a new liver than there are donors. By summer, Sean’s condition was growing more critical.

“His blood took forever to clot,” said Mindy. “He had to be given fresh frozen plasma once a month for the clotting factors.”

On Aug. 15, Mindy received the call to be at the hospital by 5:30 that morning. Sean’s team of surgeons had to fly in from out of state for the donor liver.

“The first thing I did was pray for that family,” said Marquitta. “I was thrilled Sean would have a second chance. But it meant somebody had to lose a child.”

The transplant team arrived in Kansas City at 6:15 that evening.

“They told us a liver transplant is the most complicated of all transplants,” said Mindy. “So many little things have to hook up.”

Sean’s surgery started at 7:15 p.m. and ended at 7:15 the next morning.

After the surgery, Sean was placed in the intensive care unit, where he was monitored for infection, rejection, or poor functioning of his new liver. Sean was in ICU for five days. Then he was taken to a hospital floor called the Tower where he spent nine more days.

Sean’s recovery went well except for one very scary experience.

The doctors suspected Sean might have had a small stroke. They ran a CT (computerized tomography) scan. It came back normal. They soon realized Sean was addicted to fentanyl, a pain killer. He had to be given methadone, a medicine used to bring down heroine addicts.

Sean stabilized. After a month in the hospital, he was ready to come home.

“So far, so good,” said Marquitta.

Sean has grown three inches and gained four pounds in just the last few weeks.

A few weeks ago, Sean had a mild rejection to the new liver. He was given medication to calm the rejection reaction in his body. Long-term treatment against rejection will always be necessary for Sean

Sean, at 15 months, improves daily, but the going is still rough. His immune system is susceptible to colds and pneumonia.

Local churches and community organizations have prayed for Sean non-stop. He has received cards, donations, and e-mails.

“We’re very grateful for everyone’s help. I wish I could get everybody together and thank them.”

She would especially like to thank the family of Sean’s donor. She has not written yet but plans to.

Sean is still vulnerable, but hopefully, his long periods of feeling unwell are over. The doctors say he can have a normal life.

“We just enjoy him day to day,” said Marquitta.

Sean’s father is Kenneth Dinwiddie, who works at Brown’s Lumber in Pattonsburg. Many members of the family were vigilantly at Sean’s side from day one of his stay at the hospital. Specifically, his grandmother Valorie Bussard of Kansas City, Valerie Newby and Mr. and Mrs. Kevin Dinwiddie, his aunts and uncles, and many other relatives in the Pattonsburg area. His great-grandparents are Mr. and Mrs. Earl Carter and Mr. and Mrs. J.T. Newby, Pattonsburg.