A new lease on life for Leah

By Joy Vann

Leah Goebel, a bundle of energy at 18 months old, has her mother’s sweet smile and her father’s fair hair and go-get-em attitude. She also has one of her mother’s kidneys.

Seeing Leah zoom around her Virginia Beach home, teetering from one piece of furniture to another as she begins walking like a big girl, it’s hard to imagine that just a few months earlier she spent anywhere from 12 to 16 hours a day hooked up to a dialysis machine. But that was the reality of life for little Leah. That life, such as it was, was more than some had expected for her.

At 18 weeks’ gestation, an ultrasound revealed that Leah’s kidneys were enlarged and filled with cysts. At 25 weeks, doctors at Portsmouth Naval Hospital determined that her kidneys were not developing and likely wouldn’t. In fact, they predicted that she would die shortly after birth, if not before, because of her kidneys’ inability to produce enough amniotic fluid to help her lungs develop.

Brandy and Richie Goebel were devastated but determined to give their unborn daughter a chance.

"We knew we wanted her, even if for only five minutes," her mother recalls. "We just put her in God’s hands."

Leah was born at 36 weeks’ gestation. There were numerous complications, but the most life-threatening was dysfunctional kidneys.

Leah was examined by Irene Restaino, MD, a pediatric nephrologist and director of the renal transplant program at Children’s Hospital of The King’s Daughters, who recommended peritoneal dialysis to help her tiny body remove waste products and toxins, normally a job of the kidneys. Through a soft, hollow tube surgically implanted near her navel, Leah received a special solution called dialysate into the peritoneal cavity housing the organs. The solution was exchanged several times during the night, every night.

"Dialysis is difficult," Richie said. "It basically puts your life on hold. It takes over everything – you can’t leave the house. Thank goodness Leah slept through most of it, but sometimes, she’d want to roll over in bed and it would kink the line. It got progressively more difficult as she became older and more mobile."

But Dr. Restaino knew the best bet for Leah’s survival would be a kidney transplant. She prescribed growth hormones to help Leah reach 22 pounds, the magic weight for her to be eligible for a transplant.

Dr. Restaino said Leah was an ideal dialysis patient, in large part because of her parents. "We don’t know what caused Leah’s kidney problems, but we did know that we had a good chance to fix them because her parents were so dedicated to Leah – dialyzing her every night, giving her the needed medications and injections, as well as getting her to eat," Dr. Restaino said. "Transplantation is easy compared to the regimented schedule of a dialysis patient."

Both parents were tested to see if they could donate a kidney to their daughter. On a scale of 1 to 6 for compatibility, both were a 5 – a remarkable occurrence. They decided that Brandy would be the donor.

"It was all done at the same time with the help of Wendy Raines (CHKD’s transplant coordinator), who arranged all of the pre-surgery visits and coordinated everything that needed to be done. All we had to do was show up for our appointments, and she took care of the rest," Brandy said.

In June, surgery to remove Brandy’s kidney took place at Sentara Norfolk General Hospital, which is connected to CHKD by an interior corridor, providing for quick transport of her kidney to the CHKD operating suite where Leah’s 10-hour surgery took place.

Having two loved ones in surgery on the same day was nerve-wracking for Richie and the extended family, but they were grateful for support from the CHKD staff.

"Everyone was always asking if there was anything they could do for us," said Leah’s grandmother, Mary. "And Wendy kept us updated throughout the surgeries. We were grateful for how well they treated Leah and the whole family.

Both surgeries were successful, and mother and daughter were home in less than one week. They were surprised at how quickly Leah gained color, energy and mobility. "It was amazing how much different she looked and acted," Brandy said.

Today the Goebels report that Leah is doing great and catching up on her developmental milestones quickly. She’s enjoying the simple pleasures of life, like the taste of food, which previously was unpleasant because of a metallic taste typically caused by kidney failure.

"Now Leah loves mac-n-cheese and pizza!" exclaimed her thrilled mother. "She never had an appetite before. Now it seems she doesn’t stop eating. Everything is happening so fast. . . . She went from rolling to crawling to toddling in just weeks! She was sluggish before, but now she just doesn’t stop." Her brother and sister, Justin (7) and Cameron (6), are so happy to play with her, Brandy said. "It’s like she’s been reborn."

Though Leah takes just three medications, including anti-rejection drugs, it’s a far cry from the "locker full of meds" her parents gave her before the surgery. So, life is good in the Goebel household.

"Before she was born, we felt like we were going to lose her," Brandy said. "So sometimes it’s hard to believe all that’s happened. And here she is doing so great."

Dr. Restaino practices with Children’s Specialty Group PLLC at CHKD.

This story was featured in the fourth quarter 2006 issue of KidStuff, a publication of Children's Hospital of The King's Daughters.