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Left, Jhalen, now 7, at his church in |
Weighing in at nearly 10 pounds, Jhalen Ascue had all the makings of a healthy newborn. But by the time he was a week old, his eyes were a faint yellow. Doctors reassured his parents that many babies experience jaundice temporarily at birth.
Kimberly, Jhalen’s mother, worried. After three weeks the jaundice worsened. Suspicious that breastfeeding was causing the trouble, her doctor told her to start using formula. But that made Jhalen (pronounced JAY-len) even worse. He lost weight, and the yellow in his eyes deepened every day. A blood test revealed that his liver enzymes were sky high. The fat content in the formula aggravated his condition.
By the time Kimberly wanted to return to breastfeeding, however, she had ceased lactating, so the doctor started Jhalen on a special, expensive formula. He continued to lose weight. Finally, Jhalen was diagnosed with neonatal biliary giant cell hepatitis, the result of a genetic abnormality. There was no history of liver disease in the family. Indeed, Jhalen’s older brother JaRod was and remains in perfect health. But at 6 months, little Jhalen weighed nearly what he weighed at birth.
“We were devastated and clueless about what to expect and what to do next,” recalls Kimberly. She and her husband Rodney searched the Internet and read about the disease. They also decided to seek another medical opinion at a different hospital.
Hopkins’ division chief of Pediatric Gastroenterology and Nutrition Kathy Schwarz, M.D. was alarmed when she met Jhalen. He was malnourished and required a feeding tube. Cautiously, she mentioned that Jhalen might be put on the list for a liver transplant. Kimberly remembers feeling that Jhalen would surely recover. Nevertheless, Jhalen was listed.
The next six months were trying. Jhalen started to gain weight, but the nasogastric (NG) tube feedings were rough. “I had to learn how to successfully ease a rubber tube, coated with a lubricant, through his nose, down his throat, through the esophagus without hurting his lungs,” recalls Kimberly. The gag reflex is powerful and frightening, but Kimberly learned to overcome her fear and managed to succeed.
A year later Jhalen celebrated his first birthday without the NG tube feedings. He began to thrive and gained weight. The Ascues were hopeful that Jhalen was pulling through.
In April 1998, however, Jhalen caught a virus, experiencing a cough and high fever. Dr. Schwarz discovered his liver enzymes were extremely high, and admitted him to Hopkins, where he remained for two weeks. Then, the shocking news: without a liver transplant, Jhalen had only about six months to live.
“We were in enormous denial,” reflects Kimberly. “But once we realized how desperate it was, we knew we had to act.” The Hopkins transplant team talked to the Ascues about live donor liver transplantation because waiting for a cadaveric liver might take too much time. Eager to help, Jhalen’s father Rodney Ascue volunteered to donate part of his liver. He knew Hopkins was the first transplant center to perform adult-to-pediatric live donor liver transplants. Hopkins is also the nation’s fifth largest living related pediatric liver center.
But when former Hopkins surgeon Dr. Warren Maley reviewed the blood work and found Rodney had no hepatitis shots on record and had tested positive for the antibody, the surgery was canceled.
“We were dumbfounded,” says Kimberly. “I was emotionally bankrupt.” It was especially disappointing because family members had traveled from several different states to support the Ascues on the day of the surgery. Jhalen meanwhile had become totally lethargic.
Addressing this new crisis, Kimberly volunteered to donate part of her liver. The team was concerned about her weight. “The new focus was on me, so I became a lean machine.” She exercised with a vengeance and lost 13 pounds, enough to satisfy the doctors.
On June 29, 1998, Kimberly gave part of her liver to Jhalen. Her pain post transplant was even worse than childbirth. But her emotions soared. “No matter how bad I felt, I knew that Jhalen’s entire life had involved enduring pain,” she notes. And the entire family returned to cheer her on.
By now the Ascues had come to expect setbacks. Kimberly popped a stitch picking up her baby, which slowed her recovery. Jhalen developed fluid buildup in his lungs and his fevers continued. Radiologist Sally Mitchell, M.D., and pediatric surgeon Henry Lau, M.D., found that Jhalen’s bile duct had collapsed. They inserted a stent into his bile duct, and Jhalen wore a bag to collect the wastes for two years. “I had to flush the catheter with saline and change the dressing often,” says Kimberly of the time-consuming procedure.
Kimberly could not find enough hours in the day nor the emotional stamina to combine work with her family responsibilities. She resigned her job, and the family moved to Charleston, South Carolina to be close to Kimberly’s parents.
At last Dr. Mitchell removed the bile duct tube in 2000. “I cried all over again,” says Kimberly. “Everyone at Hopkins treated Jhalen like he was special, like he was a little mayor. He loved the small red wagon the staff used to push him in, and we went straight to a toy store after Jhalen was released so we could buy him one just like it!”
Now a big boy of seven, Jhalen Ascue has no recollection of his illness and is doing well. He loves soccer, PlayStation 2 and Legos. “He’s our little miracle,” says Kimberly. “He gets along with everyone and knows all about his disease, including his dosages. He is always happy to show his scar.”
The family returns to Hopkins annually for Jhalen’s checkup, an event that allows them to reunite with the medical team. “Our experience at Hopkins was top notch,” says Kimberly. Not surprisingly, the team looks forward to those visits too. Dr. Schwarz reflects, “It gives us the greatest pleasure and satisfaction to see our young patients leading healthy lives.”
Kimberly’s Advice for Parents of Potential Transplant Patients • Cling to your faith. Sometimes bad things happen to good people to strengthen their faith. God then has the opportunity to demonstrate His mighty powers and reveal to you that He is in control. For those who may not believe in God, substitute your own personal “higher power.” Faith is the key that unlocks the door. I don’t want to minimize the trauma of the experience by no means was it an easy road to travel. The reward of restored health to my son made it all worthwhile, and I would do it again without hesitation. • Every child is unique. Love that child for all of his good qualities, and guide him to correct the bad ones. • Encourage visits from family and friends. In pediatric cases, sibling visitation is a must! Jhalen’s face would absolutely light up every time his brother JaRod came to his room. It’s well documented that physical health can improve when spirits are boosted. • If you are the liver or kidney donor, take care of yourself before, during and after the transplant. You will need all the energy you can muster and will recover faster if you follow the doctors’ orders. |
