Young Patient Overcomes the Odds, Inspires Others
Eight-year-old Evan Beier tells his UCLA Urology physicians that he will one day be elected president of the United States. Based on his positive attitude, can-do spirit and ability to overcome the odds that have been against him since birth, no one is about to disagree.
Alison Beier and Daniel Benner went to their 21-week ultrasound appointment with no hint that anything could be wrong. “We were joking that we needed to make sure the baby has 10 fingers and 10 toes,” Ms. Beier recalls. The news they received came as a shock. Their son had kidney failure and the absence of a bladder. They were told his low amniotic fluid levels would preclude him from developing lungs, and that he would not survive to leave the hospital. Nonetheless, the couple decided to go through with the pregnancy.
Evan was 3 pounds, 10 ounces when he was born at 32 weeks gestation. In addition to kidney failure and a non-functioning urinary tract, he had skeletal and limb abnormalities. He spent the first 168 days of his life in the hospital, during which he endured 10 surgeries and multiple complications. Too small initially for a kidney transplant, he was placed on dialysis, which was initially unsuccessful. Ultimately, the family went to UCLA, where a host of specialists, including urologists, vascular surgeons, radiologists and nephrologists, helped Evan through an initial phase of dialysis leading to a kidney transplant and urinary reconstruction.
Dr. Jennifer Singer, UCLA Urology clinical professor, first met Evan when he was a year old and his mother brought him in for a second opinion evaluation; Dr. Singer has provided Evan’s pediatric urology care ever since. “Alison made an immediate impression on me as a mother who had done her homework,” Dr. Singer recalls. “She was bright, well informed, strong and motivated to do whatever was necessary for Evan to live a normal life. The path wouldn’t be easy, but she took on each new challenge with grace and amazing strength.”
In March 2012, the UCLA kidney transplant team, under the leadership of UCLA Urology’s Dr. H. Albin Gritsch, transplanted one of Alison Beier’s kidneys into her then-2½-year-old son. Six months later, Dr. Singer and her pediatric urology colleagues surgically created a urinary system into which they connected Evan’s transplanted kidney. While his first kidney initially worked well, it failed a year later, so in December 2013 Evan underwent a second transplant, this time receiving a kidney from his mother’s cousin.
Even after the successful second transplant, Evan continues to face significant medical and physical challenges. He has undergone more than 40 surgeries at UCLA, along with numerous nonsurgical procedures — displaying a perseverance through it all that resulted in his being recognized as an honorary captain at a UCLA basketball game in a halftime ceremony last year. “This is a family that would not give up, and our pediatric urology and kidney transplant teams, as well as other services at UCLA, have been privileged to be able to help them through a very challenging congenital abnormality,” Dr. Gritsch says. “Evan is a miraculous kid, with a tremendous amount of will, good nature and ambition.”
“Most infants would not have survived Evan’s congenital anomalies,” Dr. Singer says. “But Evan is a survivor who has never demonstrated anything other than an exuberance for life. He is extremely bright and personable. He is always the life of the party in my clinic waiting room, entertaining other children and all of the staff. He is an inspiration to anyone lucky
enough to know him.”
Alison Beier says she and her husband never treated their son or his condition as if they were a burden. “I’ve never cried when he was in the room — even when we weren’t sure he was going to make it, I always waited until I went outside the room before falling apart,” she says. “And so he doesn’t see his life as that different from anybody else’s. He knows he’s medically fragile, but this is a boy who is full of joy. When he experiences limitations in one area, he finds a way to succeed elsewhere.”