DONATE LIFE: Sierra turned 7 thanks to a new heart

September 21, 2006 12:00 am
Dad Jason Bingham walks Sierra to her first day of first grade at Lucile Packard Children's Hospital in Palo Alto, Calif. Sisters Megan, in blue, and Lindsey walk with her down the hospital hall. Sierra wears a mask in the hospital due to the heavy immunosuppressant drugs she must take to make sure her body doesn't reject her new heart. (Submitted photograph).
Dad Jason Bingham walks Sierra to her first day of first grade at Lucile Packard Children's Hospital in Palo Alto, Calif. Sisters Megan, in blue, and Lindsey walk with her down the hospital hall. Sierra wears a mask in the hospital due to the heavy immunosuppressant drugs she must take to make sure her body doesn't reject her new heart. (Submitted photograph).

By LISA BRITTON

Jason Bingham holds in his hand the story of his daughter Sierra's six-month battle with a sick heart.

He doesn't have to say a word — the photos tell it all.

Sierra all dressed up in a pretty pink dress for Easter.

Sierra in a hospital bed in Boise. Still smiling.

Sierra giving a grin as she is loaded into an air ambulance to be transported to Lucile Packard Children's Hospital in Palo Alto, Calif.

Then her smile is a little smaller as the story moves to California, and nearly nonexistent at the fifth birthday party of her sister, Megan, where everyone sported pointed party hats to elevate the mood.

Sierra couldn't muster a smile.

"She's pale, and look at how skinny her arms are," Jason says. "She hadn't eaten for a week and a half. It was so gut-wrenching. She threw up every hour for two or three days."

The next photo in the series, taken 24 hours later, shows Sierra flat on her back in the hospital bed and hooked up to 14 IVs.

That was only a day before the Binghams finally got good news — a donor heart was available.

Sierra, who turns 7 today, suffered from a condition called dilated cardiomyopathy, a disease of the heart muscle that causes the heart to become enlarged.

The cause can be from a virus, or genetics, "or just a freak thing the heart reacts to," Jason said.

Sierra was in and out of the hospital after she fell ill in early May. After many doctor's appointments and three hospitalizations at the St. Luke's Hospital pediatric ICU, she was sent to Lucile Packard in mid-July.

She underwent tests to make sure she was a good candidate for a transplant. Then her name went onto the national transplant list.

The United Network for Organ Sharing (UNOS) is responsible for organ distribution in the United States. UNOS receives data from hospitals throughout the country, and medical teams send updates as the patient's condition changes.

Sierra was upgraded to the highest priority when her health rapidly worsened.

"She came down to see me in a very ill plateau," said Dr. David Rosenthal, director of the Pediatric Heart Failure Program at Lucile Packard.

Then her kidneys and liver began to fail.

"We were right on the verge of putting her on mechanical heart support," Rosenthal said.

Children can survive anywhere from 50 days to several months on the machine, which pumps the blood for the weak heart.

Then the news came, and at 5 p.m. on Aug. 3 Sierra went into surgery and came out five hours later with a healthy heart.

When an organ becomes available, a computer searches the database to generate a list of potential candidates based on blood type, body size, and distance.

Rosenthal said most heart transplant cases require six hours or less from the time the organ is harvested to when it is placed inside the recipient.

Patients in need of a heart can wait anywhere from several days to years before a donor heart is available.

Sierra's surgery was one of three pediatric heart transplants in 36 hours, all done by Dr. Bruce Reitz.

"I'm not sure we've ever done that before," Rosenthal said.

There are usually 10 to 15 heart transplants in a year at Lucile Packard, he said.

The hospital currently has seven children awaiting a heart transplant.

The longevity of a donor heart is tough to determine, Rosenthal said, because the first pediatric heart transplant was performed in 1982 — only 24 years has elapsed since that first heart surgery.

In 1990, there were 250 transplants in the U.S., and that number is now steady at 350 per year, Rosenthal said.

Sierra was released from the hospital on Aug. 21, and was able to join her family — parents Jason and Stacy and sisters Megan, 5, and Lindsey, 2 — at the Ronald McDonald House. The newest member of the family is due on Oct. 1.

Though a seizure from high blood pressure put her back in the hospital, she was recently released and has started attended first grade at Packard.

She is on 14 medications, has a doctor appointment once a week and a biopsy every two weeks to make sure her body isn't rejecting the heart.

The signs of rejection can include low blood pressure, or flu-like symptoms, Rosenthal said.

"Most rejections are treatable and reversible," he said.

The Binghams hope to be back home in Haines by late October.

That won't be soon enough for Sierra.

"It's hard for her to comprehend that I have a new heart, why can't I go home?" Jason said. "But her spirits are a lot better, and she's slowly getting her energy back."

Most of her medications will taper off after about a year, but Sierra will continue to take immunosuppressants to guard against rejection.

"She'll be on medicine the rest of her life, and she'll take precautions, but we all have things we have to adjust to," Jason said.

He doesn't suspect much to slow Sierra down.

"Kayaking, swimming, be a cheerleader — whatever she wants to do," he said.