Dual Organ Transplant Brings New Life to 4-Year-Old

Four-year-old Bailey Scruggs is living a renewed life since receiving a liver and kidney in a dual organ transplant last fall.  The power and importance of organ donations is celebrated each April in observance of National Donate Life Month.

On any given day you can catch Bailey Scruggs practicing ballet, eating Chick-Fil-A, or bobbing her head to her favorite singer, Taylor Swift.

And if it’s a really good day, she fits in all three.

This is Bailey’s life — the good life — a far cry from her reality a year ago as she endured the effects of a life-threatening kidney disease called autosomal recessive polycystic kidney disease (ARPKD).

A prenatal diagnosis

Bailey’s diagnosis came before she was born.

When she was 26 weeks pregnant, Bailey’s mother, Jordan Scruggs, underwent a prenatal anatomy scan, and doctors saw something that foreshadowed the next three years of her daughter’s life.

On the screen—unusually large and bright—were Bailey’s kidneys. Because one of Jordan’s family members had gone through a similar experience, she knew this was a sign of ARPKD, and her suspicions were confirmed.

While Jordan was on bed rest a few weeks later, doctors discovered that there wasn’t enough amniotic fluid, and at 36 weeks Bailey was delivered via cesarean section. Because of ARPKD, Bailey was born with enlarged kidneys and hypoplastic, or underdeveloped, lungs in El Paso.

“Bailey was born so sick. Her kidneys were massive, she was already in end-stage renal disease and her lungs weren’t working properly,” Jordan said. “It was devastating. I was worried I was going to have to plan her funeral before I left the hospital.”

Bailey was airlifted to Texas Children’s Hospital, and Jordan met with Dr. Sarah Swartz, the medical director of chronic dialysis in Houston.

Lifesaving care begins

“I knew she was headed to the best place, but I was completely overwhelmed. I had no idea what to expect and just wanted to do everything possible to give my daughter the best chance at life,” said Jordan. “Minutes into our meeting, Dr. Swartz and I spoke about Bailey’s treatment plan and what life would look like for Bailey. We decided that Bailey’s kidneys had to be removed and she needed to start dialysis.”

It was jarring and sobering news for the first-time mother.

Bailey’s right kidney was removed when she was one month old, and her left kidney was removed one month later. After these surgeries, Bailey spent five months in the Neonatal Intensive Care Unit (NICU) before the Scruggs family could return home to El Paso.

Getting the call 

Life back at home was a challenge. Part of Bailey’s treatment plan was overnight at-home dialysis for at least 12 hours, which made it difficult for the toddler to rest.

“We had a love-hate relationship with our dialysis machine. It kept her alive, but her quality of life was definitely affected.  She suffered so much for three years— it was heartbreaking.”

The wait for a transplant provided hope, but Bailey’s family was always on guard.

Pre-transplant testing showed that Bailey’s liver, in addition to her kidneys, was also affected by ARPKD, so she was listed for both a kidney and liver dual transplant. As they waited for donor organs, the Scruggs family permanently relocated to Houston.

“The process of waiting for a transplant can be very difficult, because of all the unknowns,” said Dr. Sanjiv Harpavat, a pediatric gastroenterologist and one of Bailey’s doctors. “For everyone involved, the stakes are so high, and we try our best to prepare parents with as much information as possible.”

After three failed organ match attempts, Bailey’s new kidney and liver came from a generous donor family. 
 

An answered prayer

Bailey’s dual organ transplant surgery took approximately 13 hours, with Dr. Nhu Thao Nguyen Galvan, liver and kidney transplant surgeon and Dr. John Goss, medical director of transplant services, performing the five-hour-long liver surgery. After her liver was successfully transplanted, Dr. Galvan also performed the kidney transplant, which took another eight hours.

“Dr. Galvan came out of the operating room to tell me the surgery went well,” said Jordan, happily recalling. “Bailey was in the ICU for four days, and almost immediately, I had a completely different child.”

Jordan called the surgery miraculous, remembering the smile on her daughter’s face and the joy in her heart at having normal bladder function and no longer having to be reliant on dialysis.

Bailey’s successful double organ transplant was part of a record-breaking year for  Texas Children's, a national leader in this complex procedure. In 2023, Texas Children’s performed eight combined pediatric kidney and liver transplants, the most combined pediatric kidney and liver transplants ever performed by any hospital in one year.

Dr. Swartz said the victory was sweet for the entire team that walked the years-long road with Bailey and her family.

“I’m a nephrologist, and one of the reasons I chose this specialty is because I enjoy working with patients who need chronic care over a period of time,” Dr. Swartz said. “It is an honor to help them work through all of the stressors and the celebrations.”

A donor family’s life-changing generosity

Dr. Galvan rejoices in the success of such a complex operation and the happiest of outcomes for the Scruggs family.

At the same time, she emphasizes that successful transplants are the result of two universes at work — each feeling opposite emotions.

“I don’t know if we all fully understand the profound amount of grief that donor families go through and what an incredible gift they give right in the middle of that grief,” Galvan said. “There is a level of generosity required that is beyond what many can understand. Through one grieving family’s generosity, there is another family that will experience the greatest joy. Bailey’s story is a story of how beautiful it is when those two universes come together.”

 

Source: Texas Children's Hospital

Post a Comment