GILROY—Just down from Primrose Lane, at the corner of Buttercup and Daisy in the home with a cross by the door, lives a happy little 14-month-old named Stella Rose with rings of cascading brown hair and a very swollen tummy that just isn’t right.
Stella needs a new liver.
Her own liver has for so long been so distended by disease that she never had the tummy-time infants get to build strong neck muscles to lift their heads.
And while her ordeal sometimes brings her to tears, it’s hard to figure how Stella smiles as much as she does—through exams since the age of six weeks, through prodding and injections and scans and meds and hospital beds, she smiles a lot.
She has begun hesitatingly to walk, reaching for a helping hand and always with a clear plastic oxygen tube below her button nose and attached to a metal tank.
She can say broccoli, which she loves, and mommy and daddy and Allie and Danica, her sisters, whom she loves, too.
But that’s about it for words; she cannot say how she feels about the illness that has inundated her family with hospitals and procedures and months of uncertainty behind them and ahead.
For Joe and Elizabeth Arde, it has been nearly a year of uncertainty. Their differing outlooks suggest the dilemma of parents of a child whose hold on life is fragile and tentative.
“My wife is really into faith, so she always looks at the positive. I had cancer twice, so I know this is no minor surgery,” said Joe, 42, of Stella’s hoped-for liver transplant that will save her life.
“Joe told me that sometimes he looks at her and knows we could lose her and it just breaks my heart,” said Elizabeth. “I pray a lot and he thinks about what could happen.”
Stella’s first operation, at the age of seven and a half weeks, took five hours and rearranged her intestines to do the work of a gall bladder and bile ducts that had dissolved. The operation left her with a diagonal scar across her the swollen belly.
After a Kaiser pediatrician told Joe and Elizabeth that the swelling was just gas, another doctor did test after test then thought to ask the color of Stella’s “poop,” Joe recalled with a chuckle—he owns the Squeegee Clean janitorial service.
The answer, clayish, indicated bad bile ducts; tests confirmed an abnormality that can be fatal.
Although her insides were rearranged to compensate, she still required a new liver. However, she was in the group for whom the condition is temporary, so a transplant was not urgent and Stella remained low on the list for available livers.
That changed abruptly two weeks ago when she was diagnosed with a pulmonary condition related to her acute liver disease and that causes breathing difficulties. The only cure is a transplant.
Stella was immediately sent to Lucile Packard Children’s Hospital, which is equipped for such procedures. And she rocketed to the top of the transplant list.
If approved as a donor, not yet a sure thing, Elizabeth would give 20 percent of her liver, though not without risk—the surgery could plunge Elizabeth into liver failure, Joe said.
Elizabeth Arde, 34, who works in the City of Gilroy’s finance department, said they will reach out to family if she cannot be the donor. Some children wait a year for a donor, Joe said.
Stella might not have that long.
As she waits, her condition “will only worsen,” said Elizabeth. As it is, Stella’s pulmonary condition has worsened to the point that she needs nearly twice the oxygen required when diagnosed two weeks ago.
“Kids with the condition she has live only up to two years,” Elizabeth said.
And even after a transplant Stella will require constant monitoring and eight medications daily to prevent rejection of the new organ, according to her parents.
“We’ve got a long road ahead of us,” Elizabeth said, “I have faith she will get better.”
That Stella is even here today seems a miracle.
Due to his own successful, radiation-assisted battle with Hodgkin’s lymphoma at 17, and desire for a big family, Joe had his sperm frozen; the sperm that helped create Stella stayed that way for 24 years.
Then there was the near miscarriage. Early in her first trimester, Kaiser doctors believed Elizabeth was miscarrying and prepared to end the pregnancy, Joe said.
“We were 15 minutes from them bringing in the machine,” when the couple mentioned a heartbeat seen during an ultra sound a week earlier. “So the doctors looked again, one more ultra sound, and there was the heartbeat,” Joe said.
“It’s been crazy,” he said of what the family has been through—Stella’s weight loss and feeding tubes, handing off her care in the evening when Elizabeth gets home and Joe’s workday begins, a measles scare, discovery that Stella’s spleen’s in the wrong place and all the tests and procedures.
Through it all, Stella has been “amazing,” said her dad.
“Geez, this kid has been a fighter since the first month,” he said. “She has had so many things done to her and nothing phases her. She’s as happy as could be.”
