At just 20 pounds, Baby Dylan Worthen, 13 months, is Cedars-Sinai Medical Center's smallest and youngest kidney transplant recipient. He successfully underwent a living donor kidney transplant on May 21, and went home from the hospital today, just one week and two days after his transplant. His life-saving kidney was donated by his mother, Annette Worthen, age 38. Her kidney was removed through a tiny port in a new, minimally invasive procedure known as a laparoscopic nephrectomy. Thanks to the minimally invasive approach, Annette's recovery was quick enough that she was able to care for her infant in his hospital room after the transplant.
Dylan's story actually begins long before he was born. His parents, Annette and Ron, age 41, had gone from one fertility specialist to another for seven years before they finally become pregnant with Dylan. The couple, who has two other children, was overjoyed when they learned they were pregnant, and Annette was faithful in her prenatal care.
When she went for her four-month appointment, the doctor ordered an amniocentesis, saying he saw something on the ultrasound that he wanted to check out. A second ultrasound revealed that the baby had an enlarged kidney, which was surrounded by what appeared to be a white cloud. Initially, the doctor felt that the condition was repairable, but two weeks later, he gave the Worthens the bad news. Their baby had multicystic kidneys. The outlook was grim, to say the least. He spelled out the possibilites:
1. They could terminate the pregnancy immediately, but Annette would need to go through the delivery because of the stage of the pregnancy.
2. They could continue the pregnancy and the baby would die in utero or at birth
Devastated, the couple went home and weighed their options. They went for a second, and then for a third opinion. The answers came back the same. They could abort now, or the baby would die at birth.
It was an agonizing decision, but then it became even more complicated when the third physician called to say that abortion was not an option because the pregnancy was too far along and he couldn't say for 100 percent certain that the baby would die.
The Worthens were stunned. After being told three times that there was absolutely no hope for their child, they were suddenly hearing that there might be a glimmer. They contacted their insurance company, which sent them to Neil Silverman, M.D., an out-of-plan high-risk obstetrical specialist and Medical Director of Inpatient Obstetrics at Cedars-Sinai.
Dr. Silverman, who Annette now calls her "Guardian Angel," examined Annette and the baby. "There is a problem with your baby's kidneys, but why didn't they send you to see a urologist or a kidney transplant specialist?" he asked. Annette didn't know.
Dr. Silverman referred her to Dr. Andrew Freedman, Director of Pediatric Urology at Cedars-Sinai, and part of the hospital's multi-disciplinary Maternal-Fetal Diagnosis Program. After studying the case, Dr. Freedman explained that the couple did, indeed, have options -- viable options. Dialysis was feasible, as was a kidney transplant for their baby.
Annette quickly switched her prenatal care to Dr. Silverman, seeing him every two weeks. In addition, she began seeing Dr. Elaine Kamil, Clinical Director of Pediatric Nephrology at Cedars-Sinai, and Dr. Dechu Puliyanda, also a pediatric nephrologist at the hospital. The two specialists, along with transplant surgeon Dr. J. Louis Cohen, explained to Annette and Ron that a kidney transplant would eventually be a viable option for their baby, but not immediately. He would need to weigh at least 10 kilos (about 20 pounds) before he would be strong enough to withstand a major operation such as a kidney transplant.
Annette and Ron never even considered an out-of-family donor for their baby. "We just knew that one of the two of us would be our baby's donor," says Annette. "It never occurred to us to think about someone else as a potential donor. This was our baby, and I couldn't imagine not being his donor."
Tests showed that Annette was a more suitable donor because of her smaller size. Unlike adult kidney transplants, where the kidney is placed in the recipient's groin area, infant transplants are placed into the baby's abdominal cavity, so Annette's smaller kidney would be a better fit.
Dr. Cohen, who would lead the transplant team that would place Annette's kidney into Dylan, suggested that Annette consider a new type of minimally invasive procedure for living kidney donors. He referred her to Dr. Gerhard Fuchs, Director of Cedars-Sinai's Endourology Institute and a transplant surgeon who specializes in a procedure known as a laparoscopic nephrectomy. The advantages to this procedure over the more traditional open procedure are numerous:
1. The kidney is removed through a "mini incision" (a small port), rather than through a large opening.
2. Recovery time is much faster -- with some donors going home from the hospital 24 hours after surgery and going back to work within a week.
3. There are far fewer complications and much less pain.
4. Most importantly, because of the quick recovery, Annette would feel well enough to be able to take care of Dylan in his hospital room.
During her 30th week of pregnancy, Annette was admitted to the hospital and four weeks later, on April 11, 2001, Baby Dylan was born. He was delivered vaginally -- something her previous doctors had told her was impossible -- "and came out breathing on his own," says Annette. "Dr. Silverman told me he was the strongest kid on the ward," she recalls proudly.
Baby Dylan was admitted to Cedars-Sinai's Newborn Intensive Care Unit (NICU). After two weeks, because of the Worthen's insurance plan, he was transferred to a Northridge, CA, hospital. After a few days he went home, but later had to be hospitalized again.
In August, Annette switched insurance companies so she could bring the baby back to Cedars-Sinai. On one of his visits to Dr. Kamil, they learned that he had very high blood pressure and needed to be re-admitted to the hospital in order to control it.
"Physically, he looked great," says Annette. "You couldn't tell by looking at him that he was a sick baby," but over the next few months he was in and out of the hospital, as his parents and his physicians almost "willed" him to gain enough weight for the transplant. And the efforts paid off. Thanks to the care of his highly specialized multi-disciplinary team of pediatric nephrologists, urologists, dietitians, nurses, transplant surgeons, and others, Dylan responded, gaining the necessary weight and size. His transplant was scheduled first for April 26, then was postponed until May 21 -- the week following his first Mother's Day.
"What stands out in my mind is how much this child was loved and wanted," says Dr. Kamil. "What I hope comes out of his experience is the knowledge for other parents that they do have options," she adds. "With meticulous medical management, Baby Dylan's kidney function sustained him for more than a year while we prepared him for a transplant," she says. "The message here is that the technology is available to help infants with kidney failure. There are treatment options available, and parents need to know that there is hope."
Annette agrees wholeheartedly. "The doctors, nurses, surgeons and other team members at Cedars-Sinai made my little miracle boy happen," she says. After three other doctors had told me to abort, the Cedars-Sinai team offered hope to Ron and me, and the result is that our baby is alive today."