PUV is no Match for Max the Matador

Jenny Flores' pregnancy had been blissfully routine until a prenatal ultrasound showed that her amniotic fluid—essential for life in the womb—was at a dangerously low level. This suggested problems with the baby’s kidneys and urinary tract. After two procedures failed to treat the amniotic fluid issue, doctors encouraged Jenny and her husband, David, to prepare for the worst.

Weeks passed, and the Floreses kept asking questions, researching treatment options and praying. A friend suggested they call the Cincinnati Children's Fetal Care Center, located at Cincinnati Children’s, for a second opinion. The very next day, Jenny and David went to the center for an initial consultation. After extensive testing in the morning, they met with the entire team—approximately seven physicians from various pediatric specialties, as well as nurses and other providers.

“I could not believe how many people cared about us and our baby,” Jenny said. “The doctors told us he probably had something called bladder outlet obstruction that could be due to a disorder called posterior urethral valves (PUV). They thought his kidneys or lungs could fail as soon as he was born. But they also said they would do everything they could to treat his condition, and that’s all we needed to hear.”

A Severe Form of PUV

Max Flores was born by caesarean section several days later, and immediately transferred to the newborn intensive care unit at Cincinnati Children’s. Testing confirmed the diagnosis of PUV, meaning that he had extra flaps of tissue in his urethra, the tube that leads from the bladder to the tip of the penis. These flaps block the normal flow of urine, which can damage organs such as the bladder and kidneys. Max had a particularly severe form of the disease.

During the first two weeks of Max’s life, Pramod Reddy, MD, chief of the Division of Pediatric Urology at Cincinnati Children’s, did two surgeries: one to relieve the blockage, and the other to place a catheter that would drain urine continuously through an opening in Max’s abdomen. Max would not pee on his own until he was two years old.

Preparing for a Kidney Transplant

“PUV was causing so many problems with Max’s bladder and kidneys that the care team wasn’t sure he would survive,” Jenny said. “But somehow, David and I were optimistic—we just felt like Max was in such good hands. I remember the day Dr. Reddy and two of the other doctors came in and told us Max was going to make it. Max was only two weeks old, and the doctors were already talking about giving him the best quality of life possible into adulthood. They said he would eventually need a kidney transplant, and they would do everything they could to delay that until he was older.”

For the next two years, the Flores family traveled back and forth from their home in central Ohio to Cincinnati Children’s, where Dr. Reddy and David Hooper, MD, medical director of kidney transplantation, worked together to monitor Max’s condition and provide treatment as needed.

Max had only one good kidney, and when that began to fail, the need for a transplant became evident. When Max was two years old, Jaime Nathan, MD, a pediatric surgeon at Cincinnati Children’s, transplanted a kidney donated by David. During this phase of care, Dr. Reddy performed two innovative urological procedures that would help maintain the health of Max’s bladder, knowing that if the bladder failed the kidney would as well. With his new kidney and these safety measures in effect, the hope was that eventually Max would not require a catheter to empty his bladder and would be able to urinate on his own without risk to his bladder and the transplant kidney. Today, this is the case! As of January 2018, Max has been able to urinate without the help of a catheter—he’s proud to be able to pee on his own, like other little boys do.

Max the Matador

Despite the amazing progress Max has made, he will require lifelong care due to the damage caused by PUV. But he has traveled a long way from being a critically ill preemie to a healthy, happy and active four year old. “Dr. Reddy calls him ‘Max the Matador,’ because he’s such a fighter—I love that!” Jenny said. “These kids mean so much to the care team, you can just see it. The doctors, nurses and therapists are focused on helping your child do as well as possible. They have taught us so much about caring for Max’s medical needs, and have supported us every step of the way.”