It was shortly after 5 p.m. when Matthew, a 2-year-old Antioch boy who has been waiting 15 months for a life-sustaining kidney and liver transplant, was carried to pre-op by his mother for surgery delayed for more than 12 hours since donor organs had become available Monday morning. The surgery was continuing Tuesday night.
It was the fourth time the Ouimet family had been notified that organs were available. The first three times the organs proved to be mismatched.
Matthew's parents, Kristi and Kelly Ouimet, were advised that liver and kidney transplant surgery typically lasts from six to eight hours -- but that it can last as long as 10 to 12 hours. Kristi, garbed in a sterile white "bunny suit," escorted Matthew into the operating room. Tearful but steady, she held her son as he slowly gave into the anesthetic. A few feet to the left, under the glare of the OR lights, a team of UCSF surgeons carefully split the donor liver. Within the next few hours, a portion of it would become Matthew's.
With that, the Ouimets and a group of relatives set off to find a quiet corner of UCSF Benioff Children's Hospital to wait.
It's something they reluctantly have become accustomed to ever since Matthew went into end-stage renal failure when he was 5 months old. Matthew was diagnosed with the genetic condition primary hyperoxaluria Type 1, which leaves the liver unable to cleanse harmful oxalates from the blood. Oxalate buildup affects small organs in the body, usually starting with the kidneys. The diagnosis signaled the beginning of a heart-rending medical odyssey for the family.
First, Matthew had to be stabilized. Then he had to reach and maintain a suitable weight. For 23 months, the family has ferried him to and from UCSF's pediatric dialysis unit -- a 94-mile round trip from their Antioch home -- six times a week for four-hour sessions.
Tuesday's long-awaited surgery was initially scheduled for predawn hours, but was postponed so Matthew could receive at least a partial dialysis treatment. During dialysis, it was decided he should receive a full treatment, which he did -- lying on a gurney, complaining of being hungry (doctors didn't want him to eat too close to surgery) and watching the animated kids show "Doc McStuffins." So surgery was delayed again, to 2 p.m., then 3:30, then 5.
Matthew watched TV and viewed shows on an iPad with Mickey Mouse and Goofy figures sitting at the foot of his bed. A grease board hung on the wall of room 645; under the heading "Today's goals," someone had written, "new organs."
When finally he was allowed to have a small amount of mother's milk just before 2, he quickly nodded off, sleeping for more than two hours in the crowded room.
"He's the only one who's not on pins and needles," said his father, Kelly, wearing a "Team Matthew 2012" polo shirt, a souvenir from one of the many fundraisers that have been held for his son. "The rest of us know what's in store for him, and we're a little nervous."
The Ouimets were heartened to know that the surgeons would be doctors they had met during their many visits to UCSF. Dr. John Roberts, chief of UCSF Transplant Service, would oversee the liver transplant. Dr. Peter Stock, professor of surgery at UCSF, would handle the kidneys.
"I know they have other people here who would do a phenomenal job," said Kristi Ouimet, wearing a "Recycle Yourself" T-shirt. "But to me, this is like having Joe Montana and Jerry Rice."
The Ouimets said they were told the donor was a 23-year-old accident victim. The surgeons used a piece of the donor liver for Matthew.
"(A kidney-liver transplant) is unusual for his age group," Roberts said of the surgery a few minutes before it was to begin. "The major risk is with the surgery. If he gets through the surgery and the postoperative period, then (the long-term prognosis) is pretty good. He'll be on suppressive medication the rest of his life, but the doses will be pretty small."
As Tuesday wore on, it killed some of the buzz from Monday's unexpectedly good news. The Ouimets had expected to meet that day with UCSF staff to discuss, given their long wait for organs, the possibility of considering high-risk donors.
"They came over about 9:30," said Kelly Ouimet. "They said, 'How would you like to do this today?' I was like, 'You mean agree to take high-risk donors?' They said, 'No, we've got your own organs.'"
During their countless visits to UCSF, the Ouimets have gotten to know everyone who works in the pediatric dialysis unit and several people who work at Benioff Children's Hospital across the street.
"The news spread like wildfire," Kelly Ouimet said. "As we're walking into the hospital, people are coming up to us and saying, 'Is today the day?'"
"Even the cooks in the cafeteria, the guy who replenishes the silverware," said Kristi Ouimet. "Everyone knew."
Shortly after 5 p.m., the word came from the operating room: They were ready for Matthew. Kristi turned him toward the crowd of loved ones. "Say, 'I'm going to be OK,'" she told him.
"Bye bye," Matthew said, waving his little hand.
Staff photojournalist Jane Tyska contributed to this story. Follow Gary Peterson on Twitter @garyscribe; tweet #matthewo.CORRECTION (Published 6/6/2013)
A story about the organ transplant surgery of Matthew Ouimet, of Antioch, incorrectly reported the duties performed by two members of the transplant team. Dr. John Roberts oversaw the liver transplant and Dr. Peter Stock oversaw the kidney transplant.
According to the Oxalosis & Hyperoxaluria Foundation (OHF), Primary Hyperoxaluria is a rare genetic inherited disorder that is present at birth and comes in different forms. Type I affects an estimated 1 in 100,000 to 1 in 1 million people.
In Type I, "the liver creates too little of the enzyme alanine: glyoxylate aminotransferase, or AGT. The (enzyme) deficiency causes increased amounts of oxalate and glycolate to be formed in the body & which cannot be metabolized," according to the foundation's website.
Typical symptoms include kidney stones, which some people may develop as early as birth but most by their mid-20s. The kidneys can be irreparably damaged when excessive amounts of oxalates are present in the urine, and sometimes kidney failure is the first clue that someone has the disease, according to OHF.
"Oxalosis occurs after the kidneys fail and the excess oxalate builds up in the blood and then deposits oxalate salts in the eyes, blood vessels, bones, muscles, heart and other major organs, according to OHF.