Beyond Fetal Renal Failure: Josiah’s Story, One Year Later

Josiah’s story began during pregnancy, with a routine ultrasound that revealed something devastating: fetal renal failure. At just 18 weeks pregnant, Narina was told by one provider that her baby would not survive.

But another specialist pointed her toward hope — renowned fetal surgeon Timothy Crombleholme, MD, FACS, FAAP, who now leads Connecticut Children’s Fetal Care Center. Dr. Crombleholme has spent his career pushing the boundaries of what fetal medicine can do, offering hope for diagnoses once thought fatal. That includes fetal renal failure.

“It’s so important for families to know there is a treatment option for fetal renal failure, as opposed to their OB or MFM just saying, well, there's nothing that can be done,” says Dr. Crombleholme. “This option won't necessarily be for everybody. But we want families to at least have the information to make up their own minds.”

“There was something in me that just knew,” Narina says. “This is our miracle.”

First, Dr. Crombleholme performed surgery to place a small port, called an amnioport, just under the skin near Narina’s rib cage. Inspired by the ports used in chemotherapy, the amnioport was invented by Dr. Crombleholme specifically for complicated pregnancies like Narina’s — making it possible to deliver life-saving infusions to babies in utero, while reducing the risk of the mother’s water breaking early. It allowed Josiah’s lungs to develop and gave him a chance to survive pregnancy, birth, and what would come next.

When Josiah was born prematurely at 33 weeks, Dr. Crombleholme was there. Soon after, he led the delicate surgery that allowed Josiah to begin peritoneal dialysis as a newborn. (In addition to his expertise as a fetal surgeon, Dr. Crombleholme is a pediatric surgeon — and one of very few in the nation who can perform this particular surgery on newborns as tiny as 1,500 grams.)

For the next three and a half years, dialysis did the work of Josiah’s kidneys. It was a long road, filled with hospital visits, daily medical care and constant vigilance. It was worth it. It sustained him until he was big enough for the next step: a kidney transplant.
 

Two days after Narina answered that long-awaited phone call, Josiah received his kidney transplant. The family lives in Washington state, so the transplant surgery took place at Seattle Children’s.

Recovery wasn’t easy. Josiah spent 12 days in intensive care and two weeks total in the hospital. But now, his new kidney is working beautifully.

“His labs are stable. His electrolytes look great,” Narina says. “And the difference in him is tremendous.”

It can take up to a year for a child’s body to fully adjust after transplant. Within just months, Narina was noticing positive changes — in Josiah’s growth, his energy, even his expressions. Every small sign of progress feels monumental.

“He’s happier. He smiles more. He laughs more,” she says. “This is the first time his body has all functioning organs. Everything is finally working together in harmony.”
 

Life still requires careful balance. Josiah’s immune system is suppressed to protect his new kidney, meaning they have to be extra careful about keeping him healthy. There will always be medications, appointments and hands-on daily routines. One day, many years from now, he will need another kidney transplant.

“The journey doesn’t stop,” says Narina. She thinks of it in chapters: Chapter one was pregnancy and meeting Dr. Crombleholme, aka “Dr. C.” Chapter two was NICU life and dialysis. Now they’re in chapter three: the first kidney transplant. Throughout it all, Josiah’s been an inspiration.

“Life as the parent of a medically fragile child may be complex, but it is so very rewarding,” says Narina. “What an honor it is to be chosen as parents to these little superheroes.”

As for this current chapter — it feels nothing short of miraculous.

“I will always believe it was by the grace of God that led us to Dr. C,” Narina says. “The timing of it all was amazing. And because of that, Josiah is here — thriving, growing, and living his life.”