Baby Genghis the conqueror wins the battle of his life.
Like the average toddler, Genghis Webb did all of those things. His parents assumed he was an average toddler until they took him to the doctor for his 18-month appointment. At that check up, however, Lt. Col. (Dr.) James VanDecar from the 1st Special Operations Medical Operations Squadron, Hurlburt Field, Fla., said Genghis was only in the 30th percentile for height and weight for his age group. With healthy, average-sized parents, this was an indicator that something was wrong.
Potty training and temper tantrums became the least of the Webbs' worries.
Genghis was referred to a gastrointestinal specialist at a civilian hospital in Pensacola, Fla., more than an hour from his family home in Fort Walton Beach. The doctors there narrowed the problem down to being in his liver, but couldn't pinpoint the problem. That's when the Webb family traveled more than 1,000 miles to New Haven, Conn., to see a hematologist at the Yale-New Haven Medical Center there.
The Webb family spent a week in New Haven, while little Genghis underwent tests. Three days after they returned home to Florida, they got a call saying Genghis had cirrhosis of the liver and would need a transplant right away.
"That threw me for a loop because as far as I knew, that was a drinking man's disease, and I'm pretty sure he's not an alcoholic," said Senior Airman Mario Webb, Genghis' father.
Genghis was diagnosed with tyro-sinemia, a genetic liver disease that could cause cancer and even death if left untreated.
"I should have known something before it got this bad," said Airman Webb. "He went through this spell for two or three days where he would go to daycare and sleep almost all day and then come home and sleep a lot also. He had gotten to a point where he wouldn't eat meat, and one of the effects of tyrosinemia is it turns the proteins we get from meat toxic and makes him feel bad. I just think I should have put two and two together and maybe they could've found it earlier."
The tyrosinemia had caused the cirrhosis and the development of cancerous cells in Genghis' liver.
"By the time we saw Genghis, his blood test marker that looks at whether a patient has liver cancer or not, was sky high, so we knew that Genghis had already developed cancer," said Dr. Sukru Emre, the chief of the transplantation and immunology section at Yale University School of Medicine's Department of Surgery, and the surgeon who performed the surgery. "[Tyrosinemia] is a very serious disease. Mostly we see this in small kids, newborns and maybe just after age five. Usually they either undergo a transplant or they expire. It's very serious."
"As much as you're worried, as much as you're thinking, 'he's sick,' there wasn't any time to sit there and cry about it," said Julie Webb, Genghis' mother. "It was just do this, do that. It was every single day for that entire week, he's getting his blood drawn, he's got an MRI, and you feel horrible, but it's for him to get better."
Genghis was added to the national donor list to receive a liver, but with thousands of patients already on the list it could have taken years for his name to come up. With their sick baby boy's life on the line, the Webbs leaped into action.
Airman Webb was tested to see if he qualified to be a living donor. The test results came back confirming he was a match for Genghis.
Airman and Mrs. Webb tried to explain to Genghis what was about to happen.
"I actually went online and found a kids' cartoon with the organs in it," Mrs. Webb said. "I tried to explain to him, 'This is your liver and Dr. Emre has to take it out and Daddy's liver will go into you.' He would listen, but the biggest thing he knows is 'operation.'"
"The night before the operation I stayed with him and I talked to him a little bit and he listened," Airman Webb said. "I know he didn't understand everything I was saying but he knew, 'Man, something is going on right now.'"
Three days later father and son lay in separate operating rooms, prepped for the surgery that would save Genghis. Nearly 25 percent of the left lobe of Airman Webb's liver was implanted into Genghis.
"They opened me up first to make sure [my liver] looked good and they're able to do what they needed to do because there are certain things they can't see on an ultrasound," Airman Webb said. "Then they opened up Genghis and took his liver out and [implanted part of] my liver into him."
Mrs. Webb waited nervously at the hospital, while her son and husband were on the operating table.
"Letting them go one at a time was hard," Mrs. Webb said.
The six-hour transplant operation was successful and both Webbs were on the road to recovery. The Webb family, including baby sister Zyla and big brother Ki-el, moved into the Ronald McDonald House in New Haven while Genghis and Airman Webb recovered. Three months after the surgery, a subsequent procedure was required to repair one of Genghis' bile ducts. Nearly three months later, doctors finally released him to go home.
Airman and Mrs. Webb's mothers came to help the couple after the surgeries. Julie would have to care for Genghis and Airman Webb while they recovered, in addition to caring for the couple's six month old, Zyla, who was still breastfeeding at the time.
"With both of them in the hospital, that was hard, because they were on two different floors," she said. "I would wait until Genghis fell asleep and then go take care of Mario. Then when he fell asleep, I'd go back. So I would run two floors then back to the Ronald McDonald House to try to breastfeed. But it was good as long as they were progressing."
After surgery, Genghis was prescribed eight medications, one of which he will have to take for the rest of his life.
"I think Genghis was putting on a little bit," Airman Webb chuckled while talking about his recovery. "For more than a week, he wouldn't get out of the bed unless his mom was carrying him. My oldest son was able to come down one weekend and as soon as Genghis saw him, he's out [of the bed], grabs his hand, walks him to the playroom and starts playing.
"Now it's like he hasn't had an operation," Airman Webb said. "I've seen him fall down, I've seen him bump where his incision is and it doesn't stop him."
The family has returned home to Fort Walton Beach and the Webbs say they have seen a difference in Genghis now that he has a healthy liver.
"He's doing more stuff on his own now," Airman Webb said. "He's a lot more independent now."
The Webbs see the silver lining in what could have been a dismal situation. "This is a blessing in the sense that once I get back up and working, it'll probably be a long time before we can all spend this much time around each other," Airman Webb said. "I didn't see Genghis' [first steps] because I was in Iraq. But Zyla, she's walking now and I get to see that. I'm beginning to see her personality and all those things, so I'm really lucky in the sense that I'm able to be here and we're spending 24 hours a day together. I wouldn't trade the time we're spending together now for anything."
Because of the support of the Air Force and Airman Webb's unit, the 23rd Special Tactics Squadron at Hurlburt Field, the Webb family was able to get the treatment they needed for their son.
"I seriously doubt that I would have gotten the support from a civilian job that I've gotten from the military," Airman Webb said. "I have a friend who had to go through an operation and he had to go back to work much sooner than he should have, or else they were going to let him go. And his deductible and co-pays are way higher than mine. Some of [Genghis']) medications are upwards of $800 and my co-pay is a fraction, a small fraction, of that, Airman Webb said. "Thank God I stayed in is how I sum that up."
STORY AND PHOTOS BY STAFF SGT. MARESHAH HAYNES
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|Title Annotation:||Genghis Webb|
|Date:||Jan 1, 2011|
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