You could call this column a tale of twin babies, one healthy, the other desperately fighting for his life and in need of a liver transplant.
But this story isn’t only about little James Quinn, who patiently waits for a liver while a dedicated staff at UCLA Mattel Children’s Hospital nurtures him and keeps him alive.
At its heart, this column is about the tens of thousands of people in this nation who will die if they don’t receive a healthy organ from a donor.
That’s right, donor organs matter. In the starkest terms, they allow people to live. They also remind us to love.
According to the U.S. Department of Health and Human Services, more than 113,000 men, women and children are on the national transplant waiting list.
But many will die before they get off the list.
On average, 20 people die each day still hoping for a transplant.
Thankfully, baby James doesn’t know any of this.
He only knows about crying, cooing and being loved while he faces an uncertain future.
Overcoming challenges
With six children, including her twins, and limited help, some might say that James’ mother, Jacinda Quinn, at age 34, has made some questionable life decisions.
But instead of judging, let’s learn.
At age 22, Mom was diagnosed with Crohn’s disease, an inflammation of the digestive tract. That was five years after her first child was born.
Later, she had a son, now 11 (the two oldest children live with their father), a daughter, age six, and a five-year-old girl whom Mom calls her “snugglebug.”
Today, she raises her children in a second-story, two-bedroom apartment in Whittier with no washer or dryer.
Her mother flies in from North Carolina when she can. Her father, Pastor Allen Quinn, who grew up in Huntington Beach, helps regularly and is organizing a fundraiser for baby James.
Yet this single mother doesn’t whine, doesn’t complain about the challenges. Instead, she simply gets on with life.
“I try to stay in the positive,” she shares after she gets her children off to school. “I love kids.”
With an eye on her healthy twin, Hendrix — now seven months old and 18 pounds — Jacinda explains she believes in God and what she calls “the sanctity of life.”
When her six-year-old girl was a baby and was diagnosed with something called “hydronephrosis,” a problem with the kidney, Jacinda rolled with the gut punch that required doctors at Children’s Hospital of Orange County to remove one of her daughter’s kidneys.
Difficult? To be sure, and Jacinda allows that she gets by with a philosophy of taking things one day at a time.
Still, when she thinks of baby James still in the hospital, she quietly admits, “I have my moments.”
Need for donors skyrockets
Since the early 1990s, UCLA Mattel Children’s Hospital has performed more than 1,000 liver transplants.
That is an impressive number. But what’s even more important for all of us to understand is where donor organs come from and it’s not just from, um, dead people.
A single deceased donor liver can save two children. But did you know that a living person can lead a healthy life even after donating part of his or her liver?
I’ve known about kidney donations for years. I even wrote about former Chapman University president Jim Doti’s decision to donate one of his kidneys to a guy who is now able to get around without ever-present dialysis.
But I’ll admit that I didn’t realize physicians could transfer part of a liver from a living donor.
When it comes to saving children “the surgery uses only a small part of an adult liver,” UCLA doctors explain. They also point out, “Leaving the bulk of the liver intact makes the risk lower, and recovery easier for the adult living donor.”
To be sure, transferring an organ or part of one is not without discomfort and there is always some risk with surgery. Still, there were more than 6,000 successful living organ donations last year.
Allowing your body to be harvested after death can also make a difference. But, again, there just aren’t enough donors.
In 1991, reports the Department of Health and Human Services, there were nearly 7,000 donors, close to 16,000 transplants and a waiting list of more than 23,000 people.
As recently as two years ago, however, there were some 16,500 donors, 34,770 transplants and a whopping 115,000 people on the waiting list (that number has declined slightly in the last two years).
The current breakdown for donor organs goes like this: other, 1.5 percent; lung, 1.2 percent; heart, 3.3 percent; liver, 11.6 percent; kidney, 83.7 percent.
Life-saving organs — and you may want to amend your driver’s license donor option as you read this — include lungs, kidneys, heart, pancreas, intestines, liver.
Understand, just one body can save up to eight lives.
Saving baby James
James and Hendrix came into this world last March. Both were a bit premature and in the four-pound range. But by the time they were released from the hospital, they appeared fine.
After a few months, though, it was clear something was wrong. While Hendrix gained weight, James’ growth slowed.
Jacinda took James to her pediatrician and the doctor immediately asked for a blood panel. As soon as the physician saw the results, she told Jacinda, “Take your baby to the emergency room right away.”
“My heart just fell to the floor,” Jacinda recalls. Soon, James was rushed to UCLA hospital.
It turned out that James had something called “atresia disease,” and it had damaged his liver and caused cirrhosis.
“Thank God for them,” Mom says of the doctors and nurses. “They are amazing.”
Today, James survives with one tube down his nose for feeding, another tube in his nose for oxygen and a line into his chest that serves as an IV and allows for medication.
The most important thing now, Mom explains, is for James to grow and gain weight as he waits for a new liver.
Mind you, little James is just one of 2,000 children nationwide on the transplant waiting list.
