(WASHINGTON) — After he was diagnosed with sudden, life-threatening liver failure that had no apparent cause, underwent a last-minute organ transplant and had emergency brain surgery to remove a blood clot, 14-year-old Adam Snow spoke and smiled Monday afternoon for the first time in days.
Adam said “hi” to his parents, who had been with him at the Children’s Hospital of Pittsburgh since Oct. 23.
A freshman at Butler Area Intermediate High School, Adam underwent surgery last Saturday morning after his family spread the word — on Facebook and Twitter — that he needed a whole, adult, type O-negative liver. Although Adam is still in the intensive care unit, he could go home in as little as three weeks, his mother said.
“We’re just happy that he’s alive, happy that he’s OK, happy that he’s going to lead a life that’s full,” Linda Snow, Adam’s mother, told ABC News. “We’re excited to get him home.”
The weekend before Adam was rushed to the hospital, he’d attended football practice and went hunting. Monday morning, he approached his parents with slightly yellowed eyes and told them he thought he had the flu.
Although the Snow family took Adam to the family doctor for his flu symptoms, they were sent rushing to the hospital when Adam’s blood tests showed poor liver function.
“We went in for cold and flu medicine, and three weeks later [we’re told] he’s going to die unless we get him a liver,” Linda Snow said. “It’s pretty crazy that someone could go downhill that fast.”
Adam was diagnosed with acute liver failure, which means his liver would fail within six weeks, Dr. Pierre Gholam, a liver specialist at University Hospitals in Cleveland who was not involved in Adam’s case, explained.
Adam’s surgeon at the Children’s Hospital of Pittsburgh, Dr. George Mazariegos, said doctors tested Adam for a wide panel of viruses and liver diseases that could have caused the sudden failure, but every test came back negative.
Doctors don’t know what caused Adam’s liver to shut down, but Mazariegos said he was aware of a “significant” number of similar cases.
“It’s a condition that’s frightening for anyone because it occurs in someone who may be completely healthy and has no liver disease,” Mazariegos said. “His liver really rapidly deteriorated quickly.”
Acute liver failure can also affect kidney function and cause the brain to swell, both of which could independently threaten Adam’s life, Mazariegos said. To keep an eye on brain swelling and pressure, doctors inserted a catheter just outside the outer lining of Adam’s brain, called the dura.
On Friday at 8 p.m., doctors told Adam’s parents he could die within 48 to 72 hours unless they found a type O-negative liver. He was heavily sedated and on a ventilator just weeks after attending that Friday football practice. Mazariegos said Adam’s rapid deterioration bumped him up to the top of the organ transplant list, but it could still take days or weeks they didn’t have to find a match.
Linda Snow didn’t know much about Facebook and Twitter, but Adam’s five siblings and friends spread the word that they needed a healthy organ in a hurry. They created the “Praying for Adam” Facebook page on Friday, and by Monday afternoon, it had more than 7,000 “likes.”
“It made a family out there decide, ‘OK, let’s pull the plug,'” Linda Snow said. “I do believe if nothing else that it’s made people aware that organ donors are important.
“I was not an organ donor,” she said. “And I will be an organ donor.”
The donor was anonymous, as per the Organ Procurement and Transplantation Network’s policy. (OPTN is part of the federal Department of Health and Human Services.)
But a few hours after the liver transplant, Adam had to go under the knife again, this time to remove a blood clot in his brain, which Mazariegos said was an indirect result of his liver failure. The compromised organ rendered his blood unable to clot, causing him to bleed more than a healthy person when doctors implanted the catheter to monitor brain swelling. After surgery, the blood clotted around the catheter.
“Keep Praying” the Facebook page post read as Adam went into surgery again Saturday night.
Linda Snow estimates that her son has 200 stitches in his head because she counted to 50 and gave up.
“This kid has a lot of nice scars that he can talk about,” she said, laughing.
But today, doctors removed Adam’s ventilator, allowing him to speak for the first time in days.
“We actually got a couple smiles out of him,” Adam’s brother, Christopher Snow, told ABC News on the phone as he left Adam’s room. “I’m absolutely on cloud nine.”
Adam’s hospital stay will cost hundreds of thousands of dollars, Linda Snow estimates, because one medication cost $10,000 per dose. Mazariegos said he didn’t know what the final bill would be or what portion would be covered by the Snow’s insurance, but said from experience that treatments and recovery could be expensive.
Christopher Snow helped set up the Adam Snow Benefit Fund to receive donations to help his parents pay for his Adam’s treatment. Donors can contribute to the fund on PayPal or contact NexTier Bank in Pittsburgh for more information.
“We’re very hopeful that he’ll have an excellent quality of life,” Mazariegos said. “The most important thing to ensure that was he was able to get a timely transplant, and he’s doing well from that.”
Copyright 2012 ABC News Radio