Jan 4, 2023, 11:40:43 AM CST Oct 10, 2023, 2:26:36 PM CDT

Born with prune belly syndrome, Caden amazes his nephrology team by defying all odds

Little boy looking directly at the camera Little boy looking directly at the camera

In the fall of 2020, Rebecca learned she was pregnant with a boy.

"I was so excited for my toddler, Jackson, to become a big brother. The future was so bright that my biggest concern was picking a name," Rebecca says.

But at 20 weeks, Rebecca's joy turned into fear when an ultrasound revealed that the baby had an extremely enlarged bladder, which likely meant waste was not leaving his body.

"If the waste couldn't leave his body, it would become toxic to all of his systems – so toxic that he could die," she says.

Rebecca finds the expertise and support she needs at the FETAL Center

A week after the ultrasound, Rebecca arrived at Children's Health to meet with doctors at the Fetal Evaluation and Treatment Alliance Center (FETAL Center). The FETAL team is one of the most highly specialized neonatal-perinatal medicine groups in the country, able to care for the most complex babies before they're born. The team works in tandem with our Level IV Neonatal Intensive Care Unit, which takes over caring for the baby once they are born.

Each team member introduced themselves to Rebecca and described how they would care for her baby. One would monitor the baby's bladder, another his kidneys. There was one specialist for his heart and one for his lungs.

"Your mind can't prepare for the kind of fear that takes over because nothing compares to being scared for your child's life," Rebecca says. "But everyone at Children's Health made it a priority to acknowledge that the baby they were caring for inside my body was my son and that I was his mom, and I knew they would do everything possible to save him."

Personalized care for babies and their moms before birth

Although the doctors told Rebecca they couldn't fully understand the baby's condition until he was born, they shared what they could.

The good news: The baby's heart was strong and healthy.

The bad news: His kidney function was decreasing, and Rebecca's amniotic fluid levels were also dangerously low.

"With so little amniotic fluid, they weren't sure how the baby was breathing or surviving," Rebecca says.

The doctors explained that stillbirth was a possibility, but assured Rebecca that they would do everything they could to keep her baby alive.

Unfortunately, by week 25 the team was so concerned about the baby's health that they wanted to hospitalize Rebecca until the baby was born.

"Waiting and worrying in the hospital for weeks about my unborn child, and being away from my toddler who needed me, was more than I could emotionally handle," Rebecca says. "The doctors understood how difficult that choice was and made a plan for me to stay at home and come for weekly check-ups."

Expert care for prune belly syndrome

At 34 weeks, Rebecca and her care team agreed that it was time to induce her labor. When Rebecca's baby – who she named Caden – was born, it became clear that he had prune belly syndrome. This meant his stomach muscles were severely underdeveloped, making his skin appear wrinkled.

New born wrapped in a blanketAdditionally, Caden only had one kidney, and the connection between his kidney and the urinary tract wasn't working. This meant Caden would need to be placed on dialysis as soon as he was big enough. And, like many boys with prune belly, Caden's testicles hadn't descended. Eventually, he would need multiple surgeries, including a kidney transplant.

Fortunately for Caden, Children's Health has one of the nation's top prune belly experts, Linda Baker, M.D., Pediatric Urologist and Professor at UT Southwestern.

"Every time something happened, the Children's Health team had someone who knew exactly what Caden needed," Rebecca says.

Preparing Caden and his family for dialysis

While the Level IV NICU team monitored Caden's health and worked to increase his weight, Rebecca learned everything she could about pediatric nephrology and dialysis.

"Caden's kidney can't process and expel waste and extra water like it's supposed to," says Halima Janjua, M.D., Pediatric Nephrologist at Children's Health and Assistant Professor at UT Southwestern. "He needs dialysis to do what his kidney can't."

Kids smiling for a pictureTogether, Dr. Janjua and a dialysis nurse, Mer Scott, put Rebecca through extensive training. She learned to operate the peritoneal dialysis machine. She perfected the skills to change the dressing on his abdominal catheter and learned to manage a dozen medications. Lastly, she had to be able to insert a feeding tube through Caden's nose without puncturing his lung.

"Administering peritoneal dialysis requires immense medical knowledge and responsibility. It's a 365-day a year job," Mer says. "Rebecca has done an excellent job of becoming an extension of our medical team."

Finally, in May of 2021, Caden was ready to join his brother and mom at home.

Caden grows a little stronger every day

More than a year later, Rebecca says few things are easy. But she and her boys have a good routine, and her family is whole.

"I owe everything to Mer and Dr. Janjua. They have become part of our family," Rebecca says.

Smiling picture with baby and momAlthough progress is slow, Caden is discovering the world around him and he seems to think everything and everyone is funny.

"Caden is becoming a very curious kid and has the most beautiful smile. We love having him in the clinic because he's always laughing," Dr. Janjua says.

For now, Rebecca focuses on helping Caden grow a little bit every day, with the hope that one day he will be strong enough for a kidney transplant.

"Two years ago, I was the single mom of a toddler and an unborn baby," Rebecca says. "Today, I am a different person, stronger than I ever knew I could be. The nurses and doctors at Children's Health saved Caden's life and they also shaped me into a mom who can confidently advocate for myself and my kids."

Learn more

Nationally recognized and the largest pediatric nephrology program in North Texas, Children's Health provides comprehensive kidney care that addresses all aspects of your child's well-being. Learn more about our nephrology program and services.

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nephrology, prune belly syndrome, neonatal-perinatal medicine, fetal evaluation and treatment alliance center, dialysis, transplant, kidney function, solid organ transplant

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