A Rohnert Park boy will receive a portion of his father's liver Monday
His father Noah, 32, will undergo a simultaneous operation, donating part of his liver to his son for a living donor transplant.
Dylan, who was born without bile ducts in his liver, will be at one end of the Lucille Packard Children's Hospital at Stanford. Noah will be at the other, an already agonizing distance made even worse for Noah by what will be his anaesthesia-induced absence.
“I'm not going to be able to be there,” he said.
At the same time he is grateful.
“I feel very fortunate and blessed to be able to do this for him,” Noah said.
There were 16,108 people on the waiting list for a liver transplant nationwide as of Jan. 28, according to the nonprofit United Network for Organ Sharing, which manages the nation's transplant system under contract to the federal government.
Just 14 pediatric liver transplants were performed in 2009, the last year for which data is available.
On Monday, surgeons will remove 30 to 40 percent of Noah's liver. It will be packed in dry ice and rushed to Dylan's operating room. Surgeons there will remove the blood vessels that feed Dylan's liver, separate it from his abdomen, replace it with Noah's liver, and reconnect the arteries and blood vessels.
The Levy family has known for years this day would come.
“It's real now,” said Dylan's mother, Amber, 28. “We have always known it was going to be an issue but now it's here.”
There is tremendous hope.
“This will make Dylan whole again, this will fix him,” Amber said.
But for each family member fear also surrounds the surgery, which is expected to take six to eight hours.
Dylan asks Amber about the surgery, about “how long he'll be asleep.”
For her part, she said: “It scares the hell out of me, the thought of having my husband and son on the operating table together.”
For Noah, the fear is twofold.
“I'm beyond terrified for him,” he said. “But at the same time I'm really scared that I'm never going to see him again. “I'm not too prideful to admit it, this is absolutely terrifying on my end as well.
“Days from now there is the potential that he's not going to be here, or I may not be here,” Noah said. “It almost feels like a death sentence, just because of the unknown.”
Liver transplant survival rates are relatively high, according to the organ sharing network: For the period 1997 to 2004, the latest for which data is available, 76.6 percent of 1- to 5-year-old patients were alive five years after surgery.
Dylan's condition, biliary atresia, occurs in fewer than 300 babies annually nationwide. It prevents bile from draining from the liver, which leads to cirrhosis, or scarring of the liver tissue. He was diagnosed at six weeks old.
At nine weeks old he was operated on to attach his intestines to his liver, so they could drain the build-up of bile. But already-formed scar tissue continues to block blood flow to his liver.
As a result, on Oct. 21, while he was at home with his mother, a vein in his esophagus burst. He lost half his blood in the hemorrhage. The long-expected transplant became suddenly an urgent necessity.
To add to the family's stress, Amber lost her job as an oral surgeon's assistant because of the time she spent with Dylan in the hospital. They are facing $40,000 in medical bills before the surgery, she said, after which both she and her self-employed husband will be out of work for a recovery period of from eight to 12 weeks.
These days, besides the upcoming transplant, Amber worries that Dylan, who takes 15 medicines a day, will hemorrhage again.
“I don't sleep anymore,” she said. “You worry that in the middle of the night you're going to wake up and he's going to be covered in blood.”
At the end of January, the Levys went to Tahoe, on a trip funded by the Greater Bay Area Make-A-Wish Foundation. Dylan wanted to see fresh snow and on their last day there, more than a foot fell.
The day after they returned, Noah Levy wrote a journal entry on the website the family has set up with information about Dylan and his condition, www.dylanwlevy.com.
“I ask you to think about your loved ones, think how lucky you are; things can always be better or worse in anyone's life but at this moment and this point in time...I can't think of anything much worse than how I feel at this very moment in time,” Noah wrote.
“How is any of this fair to him and to her (Amber)?” he wrote. “I would give anything to make all this go away, even my own life if it meant he could live a more normal one.”