Wednesday, August 25, 2004
Copyright © Las Vegas Review-Journal

I NEED AN ORGAN DONOR

Parents set up Web site seeking directed transplant for infant son

Much of the www.babymarkjr.com Web site is written as though 3 1/2-month-old Mark Ricciardi Jr., below, who needs a liver and small intestine transplant, is sharing his story. Photo by John Gurzinski. Photo by John Gurzinski. Mark Ricciardi Jr., born on Mother's Day, needs a liver and small intestine transplant. His parents, Mark and Sara Ricciardi, have set up a Web site, www.babymarkjr.com, to attract donors. Photo by John Gurzinski.

It's terribly sad, but I need a Mom or a Dad who has just lost their precious baby to give me the gift of life through organ donation. Sometimes I find my mom crying and she tells me she's crying for the family of my future donor."

So goes a portion of the www.babymarkjr.com Web site devoted to the plight of 3 1/2-month-old Mark Ricciardi Jr., a Las Vegas Valley infant whom doctors say will die within the next 15 months without a small intestine and liver transplant.

"We're hoping to increase organ donation awareness so that Mark Jr. and others who need transplants can be helped," said Sara Ricciardi, 42, as she and her husband, attorney Mark Ricciardi, 48, finished an intravenous feeding of their son in their Henderson home.

The Ricciardis' use of a personal Web site to help procure organs came after the family of a Houston man, Todd Krampitz, used a Web site, billboards, a toll-free number and media interviews to attract a directed organ donation.

Less than a week after his "I Need A Liver -- Please Help Me" national media campaign began, Krampitz, a cancer patient, underwent successful liver transplant surgery on Aug. 12 at Houston's Methodist Hospital. Doctors there used a liver from an out-of-state donor whose family specifically asked that the organ go to him.

"I saw a story on Todd Krampitz on `Good Morning America' while I was on business in Chicago and thought what his family had done made sense," said Lisa Bodensteiner, Sara Ricciardi's sister.

It didn't take long for the California businesswoman to persuade the Ricciardis that they should create a Web site revolving around their son's desperate situation. It was up and running last weekend.

The Krampitz case has caused considerable controversy in organ procurement circles, drawing criticism from officials across the country because his campaign allowed him to jump over others on the priority list.

The Texan, diagnosed with advanced liver cancer in May, had been placed below other patients on a waiting list because of his poor prognosis, which one physician said was similar to that of former baseball great Mickey Mantle, who died of cancer two months after receiving a new liver.

Krampitz' family refused to accept the prognosis and decided to utilize a rule that allows donors or their families to designate the recipient of an organ.

Ken Richardson, executive director of the Nevada Donor Network, said the Krampitz advertising campaign "illustrates a bad trend."

The intent of the directed donation rule, he said, was for a family to be able to direct an organ to someone on a transplant list whom they know well.

Nearly 87,000 people nationwide are on organ donor waiting lists, including about 200 in Nevada. Only kidney and pancreas transplants are done in Nevada, so those who need other organs transplanted must go to other states for the necessary procedures. Sixteen people die every day because there are not enough organs available.

Richardson said that in Nevada about 40 percent of licensed drivers are registered as organ donors. An individual has the option of having "Organ Donor" listed on his driver's license or ID when it it is first issued, upon renewal or upon a change of address. Donors should also obtain a card that specifies their desires in accordance with the federal Uniform Anatomical Gift Act. Applications can be obtained from the Nevada Donor Network at www.nvdonor.org. For more information call 796-9600.

"Not everyone has access to the kind of money it takes to do billboards, start a Web site and launch a PR campaign to convince someone to donate an organ to their loved one," Richardson said. "It creates an unequal playing field."

Although Sara Ricciardi understands the position of organ procurement officials, she said she can't be critical of the Krampitz family. Had they not done their campaign, she said, the family who donated the liver of a loved one might never have donated an organ at all.

What the Ricciardis share about their son's condition on their Web site is heart wrenching. Born on Mother's Day at Spring Valley Hospital, Mark Jr. was transported to Valley Hospital Medical Center as soon as doctors realized he needed the attention of an intensive care unit for babies. Because she delivered by cesarian section, Sara Ricciardi had to stay behind and recover.

"That was so hard," she said.

Drs. Howard Baron, a pediatric gastroenterologist, and Nicholas Fiore, a pediatric surgeon, determined that malrotation, an abnormality in which the intestine does not form in the correct way in the abdomen, occurred during the baby's fetal development. That defect produced a volvulus, a condition in which the bowel becomes twisted.

The vast majority of children with malrotation who experienced a volvulus do not suffer long term effects if there is intestinal damage, although surgery is required to correct the problem. However, in Mark Jr.'s case, the volvulus cut off blood to the intestine, in effect, causing the organ's death.

Fiore had to remove the entire small intestine.

That means the child now must receive all its nourishment intravenously. Unfortunately, over the long term that causes severe liver disease. When Mark Jr. was taken to the UCLA Medical School in Los Angeles for a transplant evaluation, doctors determined he would need both a small intestine and liver transplant.

Now on UCLA's transplant waiting list, Mark Jr. must reach at least 16 1/2 pounds before a transplant can take place. He now weighs 13 1/2 pounds.

"I think he should be ready for a transplant by October," his mother said.

Baron said that research shows that in multiple transplant cases such as Mark Jr.'s the one-year survival rate after the surgery is 70 percent. Fiori said he handled a similar case where the child is still doing well at 3 years old.

Both men say the intestinal transplant presents more significant challenges than the liver transplant because there is greater risk of rejection. Small intestine transplants have only been under way for about the last 10 years.

"I do give him formula to drink in a bottle, but it's just so he'll remember how to eat through his mouth once he gets his transplant," said Sara Ricciardi as her son sucked on the bottle she was holding. Almost as soon as the baby drinks the formula, it leaves his body in a tube.

As their son's worsening liver condition becomes more visible -- increased amounts of bile pigments in the blood turn his skin color more yellowish with jaundice -- the Ricciardis suffer more.

"You just have to take it one day at a time," Mark Ricciardi said, sighing.

The Ricciardis have another child together, 3-year-old Mary. Mark Ricciardi has two other children, Benjamin, 20, and Sarah, 17, by another marriage.

At this point, the Ricciardis don't plan on using billboards to advertise their son's plight. Fortunately in America, they say, there aren't that many children who die young, so the chances of a directed donation are slim.

Although a piece of an adult liver could be used, if necessary, in a transplant, Fiori said, it is critical to have a small intestine that would be at least a near fit for Mark Jr.

"I know it's hard for people to think of their child dying," said Sara Ricciardi, her voice breaking. "But if it were to happen, some other child may be able to live. Even if Mark Jr. dies, if his Web site helps save one person's life by getting someone thinking about donating an organ, then he would have done something meaningful with his life."