Simuel Millwood

Tina, John and their "ball of fire" Simuel, 9 months post transplant.

A few days after Simuel Millwood was born on Aug. 13, 2001, he developed jaundice, a yellow discoloration of the skin and eyes. Simuel's jaundice — a common newborn symptom — did not clear up with the usual ultraviolet light therapy. His pediatrician in White Oak, Texas, began testing Simuel to identify the problem.

At one month of age, Simuel had exploratory surgery that confirmed physicians' suspicions — he had biliary atresia, a rare liver disease that begins soon after birth. He also had a host of congenital defects in other organs associated with his biliary atresia.

Simuel had many surgeries — to remove his gallbladder, to close a hole in his heart, to repair several hernias, a leak in his bowel, and another intestinal problem — and assorted other procedures.

Simuel's surgeons in Dallas tried to correct the biliary atresia by removing the biliary ducts and attaching the small intestine directly to the liver at the spot where bile is expected to drain. Unfortunately, Simuel was among the 20 percent of infants who do not benefit from this procedure. Their only treatment option is a liver transplant.

Visiting Mayo Clinic

The family had decided to have Simuel's liver transplant in Dallas, close to home, family and physicians they knew well. Then they learned that their insurance required all transplant patients be evaluated at Mayo Clinic in Rochester. Tina and her husband, John, took Simuel there in February 2002 for an evaluation. They assumed it was simply a formality for insurance purposes.

"While we were at Mayo Clinic, a nurse asked us if we wanted to be placed on the transplant list there," says Tina. "We wanted to increase our son's chances of getting a liver quickly, so we said yes."

One month later, the family had a similar evaluation at the hospital in Dallas and Simuel was placed on their transplant list.

"We were in Dallas for a week having various pre-transplant tests," says Tina. "We returned home on Friday to a message on our answering machine from the Dallas hospital telling us that they had sent test results to Mayo Clinic. John and I went out on the front porch to talk and decided to call Mayo Clinic the next Monday to make sure they had all the information they needed. I said a prayer. Several hours later, the phone rang. I thought to myself there is no way that could be 'the call.' The next thing I knew, John was banging on the door motioning for me to come inside. It was 'the call,' and it was from Mayo Clinic! We ran around like crazy getting ready to go to Minnesota. The decision about where to have the transplant had been made for us."

A New Liver And New Hope

The next day, March 23, 2002, 7-month-old Simuel received a new liver. For two months he was under the care of healthcare providers in the pediatric liver transplant program at Mayo Clinic, one of the largest referral centers for liver disease in the world. He rejected his new liver twice, but was stabilized with anti-rejection medication.

"At Mayo Clinic, we are able to transplant children with livers from both deceased donors/organ banks and from live donors," says transplant surgeon Michael Ishitani, M.D. "Simuel was fortunate to receive a perfect liver for his size before he became critically ill."

More than one year later, Simuel is a walking, talking "hyper boy," according to his mother. "He's underweight for his age, but all in all he's a healthy ball of fire," she says.

"When I learned my baby needed a liver transplant, I went through something like a grieving process. But I knew I had to get through it to be able to take care of him. We had wonderful support — from Simuel's grandmothers, who came to Mayo Clinic with us; many friends from Texas, who called us when we were in Rochester; and our employers, who raised money for us and helped us through that time."

"The transplant and the first year afterward is an adjustment period, but it's pretty much smooth sailing from there," says Tina. The family returns to Mayo Clinic once a year for a liver biopsy and checkup.

"Simuel's family is great, and we're really hopeful that he'll have an excellent result from his transplant," says Dr. Ishitani.

Tina says there are no words to describe the care Simuel received while at Mayo Clinic. "Everyone there not only took care of him, but took care of us too. We didn't quite expect how caring and helpful everyone was. They taught us so much about how to care for Simuel and showed us as many times as necessary until we got it right."

"For three Texans who didn't expect anything special, we were so surprised," Tina says. "The gracious care of every person at Mayo Clinic was totally mind-blowing. We are very grateful to the entire team who cared for Simuel. We just can't ever thank them enough."

Since 1985, Mayo Clinic Rochester liver transplant specialists have performed more than 60 liver transplants in children and more than 1,200 in adults.