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Against All Odds

A family’s struggle between life and death

Tanea Bailey’s pregnancy had been an uneventful one, so when she went in for a regular OB/GYN appointment in Austin, she didn’t expect anything out of the ordinary. But with no prior incidence or complications, her high blood pressure that day was a cause for concern for doctors. A routine check-up quickly escalated into something else altogether. As they took her blood pressure again, the nurses asked her if she was stressed, if she was feeling alright. Tanea’s blood pressure was 200 over 130. Her son, Jordan, Jr. was coming.

Tanea and her husband, Jordan Gadison, drove to the hospital. “We just couldn’t believe he was coming. We didn’t feel like we were ready!” Tanea laughed.

Jordan, Jr. was delivered on April 10, 2013, in Austin. His dutiful (and a little sleep-deprived) father was there to receive his son.

“I was excited. I had my camera ready to go, and as soon as they pulled him up, I was taking pictures,” Jordan said. “They wrapped him up and handed him to me and, I mean, it just lit up my heart.”

Tanea remembered Jordan, Jr. being lifted up so she could see him for the first time. The baby cried only momentarily before stopping and quietly and attentively looking around the room. It seemed he was a perfect, healthy baby.

Within 36 hours, the new family’s life would change forever. But it wasn’t the doctors who first recognized that something wasn’t right. “They tell you about parent intuition, and we just knew that something was wrong,” Tanea said. “He was cold. He didn’t want to eat. His jaws were tight.”

The medical team in Austin was unable to raise Jordan, Jr.’s body temperature, and he was admitted to the neonatal intensive care unit (NICU) for testing. Doctors eventually diagnosed the child with CPS1, carbamoyl-phosphate synthetase 1. This extremely rare genetic disorder causes toxic levels of ammonia to accumulate in the bloodstream, often resulting in irreversible brain damage, coma and death.

“The doctor in the NICU basically said that they’d never seen this before,” Tanea said. “This was something people only read about in books.”

Jordan, Jr.’s prognosis was grim.

“When the doctor told us that my son could die, it was scary,” Jordan said. “All through Tanea’s pregnancy, I prayed over and over again that he wouldn’t have an illness and that he would be healthy. It was upsetting and emotional, and I didn’t really know how to handle it.”

Though his physicians in Austin were initially optimistic, Jordan, Jr.’s condition began to deteriorate rapidly. Soon after, it was determined nothing more could be done. With no other alternatives, Tanea and Jordan made a decision no parent should ever have to make.

“We had prepared the house for him,” Tanea said. “We decided that instead of letting him pass in a hospital bed, we wanted him to be home with people that he loved.”

As they made arrangements for end-of-life care, a geneticist at the hospital in Austin approached Tanea and Jordan with one last option: Texas Children’s Hospital and a liver transplant.

“He told us that specialists at Texas Children’s believed they could treat Jordan, Jr. until he was big enough for a liver transplant,” Tanea recalled. “We knew there could be complications, so it was basically a decision for a chance at life or definite death.”

Time was precious, and Jordan, Jr. had to be transported from Austin to Texas Children’s Hospital via Kangaroo Crew air ambulance. Because of the severe nature of his case, he was moved up on the liver transplant list. It was then a matter of waiting.

“We knew we wanted the transplant at Texas Children’s — they’re the best,” Tanea explained.

“In preparation for the transplant, they always tell you to be ready and to be by the phone.” And so Tanea and Jordan waited. The call finally came on September 8, 2013. Jordan, Jr. had received an organ offer — and then the surgery was a success.

Today, Jordan, Jr. is a happy, healthy little boy, and according to Dr. David H. Leung, attending physician at Texas Children’s Liver Center, “Jordan, Jr. is thriving.”

Texas Children’s Hospital treats the most critically ill patients, providing an elite level of specialty pediatric health care. For many families, Texas Children’s Hospital is the only hope, the last chance when other attempts have failed. This past year, Texas Children’s Hospital launched the Promise Campaign, a monumental endeavor in the hospital’s history, to ensure that all children who come for help and healing always have the best quality care available — just like Jordan, Jr. did.

Hear more from Tanea and Jordan.