The sickly, 13-month-old child with the yellow-green tint of jaundice sat on the floor, eating macaroni from a blue plastic bowl. When he finished, he covered his face with the bowl and gurgled cheerfully. "We push food into him like you wouldn't believe," his mother said.
But because the baby's liver doesn't work, hardly any of the food is digested; he is malnourished and underweight and has suffered from pneumonia and blood infections.
Nicky's parents, Ginger, 20, and Michael Goode, 24, who live with Ginger's parents in Morningside, are trying to raise $100,000 for a liver transplant operation they hope will save their baby's life.
Because the federal government classifies the operation as experimental, most medical insurance programs won't pay the expense. However, the federal government has agreed to reimburse Maryland half the cost of the operation if it agrees to pay the other half. So far the state has made no decision.
Jackie Wilson, a spokeswoman for the University of Pittsburgh's Children's Hospital, where almost all childrens' liver transplants are performed in this country, said most transplant patients somehow have managed to obtain the money, often through community fund raising or special state legislation.
Nicky will go to Pittsburgh for a detailed evaluation next month, where doctors will decide whether he is healthy enough to make the risks of a liver transplant worthwhile. If Nicky is considered a suitable transplant candidate, he will be placed on a waiting list currently containing 40 children, according to Wilson. Because it is difficult to find suitable organs for children, the wait is often long, she noted.
Faced with the possibility that they will have to raise a large amount of money for the operation, the Goodes have found themselves explaining their baby's complex medical history to strangers, describing the effects of a liver that does not work and spelling out difficult and potentially fatal diseases, such as Alagille's Syndrome and Biliary Atresia.
Biliary Atresia means that Nicky's liver does not connect with his intestines. Last October, surgeons attempted to reconnect them. But during preliminary surgery they found Nicky also had Alagille's Syndrome, a hereditary disease that meant bile ducts within the liver itself were not functioning. Reconnecting the liver would make little or no difference.
Without a working liver, which is vital to digestion and removes foreign matter and poisons from the blood, "the doctors were saying that was basically it for Nicky," Ginger Goode recalled.
But when the Goodes learned of recent strides made in liver transplant surgery, they and their doctors decided to try to get a liver transplant for Nicky.
Transplants have been done in the United States for 20 years. About 50 operations are performed each year by Dr. Thomas Starzl of the University of Pittsburgh's School of Medicine--more than half the total number conducted in the country.
Until recently, liver transplant patients have had one-year survival rates of less than 50 percent, according to the Children's Liver Foundation, a national, nonprofit research organization.
But foundation chairman Maxine A. Turon, who has protested the experimental classification, said a new antirejection drug, a fungus extract called Cyclosporin-A, has boosted the one-year survival rate for children to 91.7 percent.
While the Goodes await help, doctors have said "we could put him to bed, and the next morning he would be gone," Ginger Goode said. Michael Goode, who rises early to go to his carpenter's job with Omni Construction Inc., checks Nicky's condition each morning.
The main problem is that Nicky cannot digest starches. His parents, who feed him a special diet of food formulas and medicines, find it hard to get his weight up to the 25 pounds doctors would like him to be before the operation, which could last between eight and 24 hours. Since April Nicky has not gained weight.
Seeing the Goodes' dismay at the possible $100,000 cost of the operation, longtime family friend Jennie Langford of Bowie decided last April to start raising money. She enlisted the help of Ginger's brother, Thomas Chamberlain, a member of the Morningside Volunteer Fire Department.
The department has set about fund raising with determination and has helped raise $5,662. Together with the Dixon Line Band and other organizations, it will sponsor a free concert Aug. 22 at the parking lot between the Village Barn and the Veterans of Foreign Wars lodge on Suitland Road in Morningside. Donated cars will be raffled off, and food, balloons and helicopter and pony rides will be sold to raise money for the operation.
"I made up my mind that, one way or another, we would raise the money," Langford said. "It's coming together slowly. There are a lot of people out there who want to give and not get."
Langford also has helped organize a letter-writing campaign to government agencies and Maryland politicians and a letter to President Reagan in an effort to persuade the federal government to change the operation's experimental classification.
Meanwhile, the Goodes have begun an unusual baby scrapbook that includes newspaper clippings on Nicky's problem and letters from politicians and government officials, encouragement and promises of help from some and bureaucratic mumbo jumbo from others.
Liver Foundation chairman Turon said 350 to 400 children each year are born with Biliary Atresias, and most require liver transplants. But their parents are faced with the huge cost of the operation, and a shortage of donated livers causes delays, Turon said.
Furthermore, she said, few surgeons are in this field because the experimental status makes funds hard to obtain. Last year, she said, 10 children died while waiting for transplants.
Ginger Goode, who contacted Turon several months ago in an effort to get help for Nicky, has started a Southern Maryland chapter of the organization. Only family members have joined so far.
"After Nicky gets straightened out, I'm going to really work on it," she said.