Open Fetal Surgery Is Beginning of Long Journey for Max
Beth Livingston was having a picture-perfect pregnancy until a serious complication was discovered during her 20-week ultrasound. She was referred to the Cincinnati Children's Fetal Care Center for evaluation where her baby’s diagnosis was confirmed as bladder outlet obstruction. He wasn’t able to urinate properly, and his condition was so serious he would not survive if it went untreated.
His bladder outlet obstruction was caused by posterior urethral valves, where an abnormal fold of tissue in the urethra blocked urine from flowing freely out of the bladder. If not corrected, the blockage would make the urine back up in the bladder, the ureters and the kidneys, threatening kidney development. In severe cases such as Max’s, the backup can lead to too little amniotic fluid which can threaten lung development.
During their visit to the Fetal Care Center from their home in nearby Alexandria, Kentucky, Beth and her husband, Tim, met with a team of caregivers including surgeons, nurses, Social Services, Pastoral Care, Nephrology and Urology. They learned about their treatment options and, guided by the team of fetal specialists, quickly made the decision for Beth to undergo open fetal surgery.
A Complex Surgery
Two weeks after the diagnosis and at 23 weeks gestation, Beth had a procedure where her baby was exposed from the waist down, with the umbilical cord still attached, while surgeons created an opening for the baby to urinate (a fetal vesicostomy). “We were very nervous,” Beth said. “But we focused on the positive. We wanted to give our baby the chance to live.” The vesicostomy allowed urine to properly leave the bladder, thereby restoring amniotic fluid and optimizing development of the lungs. The baby was then put back into the womb for the remainder of Beth’s pregnancy.
Beth spent the next 13 weeks on bed rest. Fetal Care Center specialists monitored her baby’s growth and development during that time, aiming for Beth to carry her baby as long as she safely could. Because of her prior fetal surgery, a C-section was planned. Complications and low fluid levels made it necessary for Beth to deliver during her 35th week of pregnancy. Finally, on May 12, 2008, Max Anthony Livingston was born.
“He had fluid around his lungs, and he was breathing very rapidly. His heart and lungs were working too hard,” Beth said. Max was diagnosed with respiratory distress syndrome, meaning his lungs were immature due to his prematurity. He was transferred to the Newborn Intensive Care Unit (NICU) at Cincinnati Children’s for further treatment.
Beth and Tim knew a lengthy hospitalization for Max was a possibility even before he was born. “The doctors at the Fetal Care Center were good at explaining everything. We felt very prepared,” Beth said.
A Survivor Through and Through
Max ended up spending six months in the NICU. Now he’s a spunky first-grader, full of smiles and laughter. But it’s been a long road getting here. In between Max’s birth and now, Max has had 17 surgeries, including a kidney transplant (Beth was the donor). He takes medication three times a day. He has had a g-tube (gastrostomy tube) since he was an infant, using it now to get the high amount of fluids that his adult kidney demands. He’s undergoing occupational therapy to help improve his fine motor skills. His bladder still doesn’t function as it’s supposed to due to the damage it sustained in utero.
But the challenges he’s overcome in that time are just as many. He has graduated from physical therapy. He went from being fed by his g-tube to eating by mouth. He didn’t talk or walk before his transplant at age 2. Now, says his mom, he’s very loud and vocal. “Sometimes he doesn’t stop talking,” she jokes.
Max still visits Nephrology for check-ups once a month. He works with an occupational therapist on his fine motor skills. He may need another surgery on his bladder. He’ll have monthly blood draws for the rest of his life. And he may one day need another kidney transplant.
But he is a fighter. “The odds were against him when he was in the NICU,” Beth recalls. “He wasn’t supposed to survive.” She smiles as she thinks about how far he has come. “He’s the most laid back, happy kid we’ve ever met. His laugh is contagious. His teachers say that his smile brightens their day.” And he now has a younger sister and brother. While his medical challenges total higher than he can yet count, Max continues to show everyone around him that he’s a survivor.
His is a story in which the Fetal Care Center will forever be a part. And for that, the Livingstons are grateful. “Everyone at the Fetal Care Center was wonderful,” Beth said, “from the receptionist to the chaplain to the nurses to the surgeons.” She says she and her husband know they made the right decision for their son. “Seeing Max smile makes it all worthwhile. He’s proof that miracles do happen.”