After trying various treatments for the jaundice, including indirect sunlight, the Wards took Cooper to St. John Medical Center, in Tulsa. At two months old, Cooper was admitted to the hospital to undergo a series of tests to determine the cause of the jaundice. First there was blood and other lab work, then a scan which indicated the lack of blood flow to the liver, which led to a needle biopsy and eventually a full biopsy and exploratory surgery.
Once the tests were complete, Cooper was diagnosed with biliary atresia, a congenital absence or closure of the ducts that drain bile from the liver. On average, biliary atresia affects one out of every 15,000 live births. There are two available treatments for biliary atresia, the Kasai procedure, in which a piece of the intestine is used as a drain for the liver, or a liver transplant.
Cooper’s doctors determined that because his bile ducts were badly damaged he was not a candidate for the Kasai procedure. Shortly thereafter Cooper was sent to Integris Baptist Medical Center, in Oklahoma City, where he was evaluated and put on the transplant list.
“The doctor prescribed Cooper medication and sent us home to wait,” Brandy Ward, Cooper’s mother remembers. “If he got sick, or worsened, we would drive to Oklahoma City to see his team of doctors.”
“On January 29, 2001, Cooper was admitted to Baptist, so the transplant team could manage his health until a donor was available.” Brandy remembers. “After spending 10 weeks in the hospital no donor was available, and we went home.”
Cooper continued to get worse and one month later the Ward’s found themselves back at Baptist Medical Center, this time for the long haul. On June 20, just three days shy of his first birthday, Cooper’s health had declined so much that he was moved to the pediatric intensive care unit (PICU). Being moved to the PICU put Cooper’s need for a liver at a higher status. “At this point we were living hour by hour and day by day,” Allan, Cooper’s father recalls.
As the situation became more dire, and the Ward’s faced disappointment after disappointment when they would learn of potential donors that were ultimately unfit for Cooper, they became frustrated and uneasy. “We had a potential donor, and the doctors came in and started preparing Cooper for surgery, but the liver ended up going to someone else,” Allan remembers. “This was very difficult because Cooper was so sick and we were living day to day.”
Surprisingly, Cooper was doing better than most babies in his situation would be. He was eating, giggling and happy. On July 6, 2001, Brandy took Cooper out of the PICU to 10 West, to a room she called home over the last 10 weeks, where she could give him a bath and see the nurses that had taken such good care of him earlier in the year. Just as Brandy had finished giving Cooper a bath, one of the nurses told her PICU director Dr. Johnny Griggs, wanted Cooper back in the PICU immediately, there was a potential donor.
Brandy took Cooper back to the PICU, where the whirlwind began. “Everything started happening so fast,” Brandy and Allan recall.
Within an hour, Cooper was put on a ventilator and underwent plasmapheresis, a procedure in which blood is separated into cells and plasma. The plasma is removed and replaced with fresh frozen plasma, a blood product called albumin. This cleared toxins out of Cooper’s blood.
On July 7, 2001 Cooper received a new liver, from a 20-month old girl from Texas, and bounced back to a healthy life. Although Allan and Brandy were relieved to have their child healthy, in the back of their minds they wrestled with the thought of what made his transplant possible.
“The hardest part was knowing that someone else had to lose their child for ours to live – that was not easy to deal with,” Brandy explains. “I don’t know that we still are totally at peace with that. That is still something that is really hard to swallow.”
Cooper recovered quickly after his transplant and Allan and Brandy were enjoying having their son at home. Shortly after returning home, Cooper fell down and hit his mouth on a wooden portion of the couch and broke his lip open. One month after his fall, his gums started to swell and grow over his teeth, making it hard for Cooper to eat and drink. A usually happy child, Cooper was constantly fussing because of the pain.
The cause of his gums swelling and growing over his teeth was undetermined, but may have been linked to his anti-rejection medication. Cooper was taken to Baptist Medical Center, where an oral surgeon performed a biopsy and surgery to remove the gums from the teeth. The Ward’s spent six weeks in the hospital nursing Cooper back to health.
Doctors suspect that because of Cooper’s poor health in his first year and the medications he took after his transplant, his teeth were weak and broke easily. To protect Cooper’s teeth, he was given silver caps. Doctors anticipated Cooper’s permanent teeth would be healthy. His permanent teeth have come in strong, but unfortunately, they are discolored.
Now a healthy, playful five-year-old, Cooper looks forward to his family’s Christmas vacation in Florida. Although he cannot get in the ocean water because of the risk of infection, he anxiously awaits his daily walks on the beach and sandcastle building sessions with his Nana and Papa Lee that, without the generosity of his donor’s family, would be impossible.
