Lindsey holding her own in ICU

By By Heidi Hagemeier February 18, 2013 10:58 am

By Heidi Hagemeier

WesCom News Service

PALO ALTO, Calif. — Lindsey Bingham began breathing on her own Friday morning, roughly 24 hours after surgeons successfully completed an operation to give her a new heart.The 9-year-old Eastern Oregon girl was taken off the ventilator and has been awake, said her father, Jason Bingham. She remains in the cardiovascular intensive care unit of Lucile Packard Children’s Hospital in Palo Alto, Calif., which doctors say is standard for three to seven days after a heart transplant.


“She can’t eat too much yet,” Jason said Friday afternoon. “All she wants is ice.”

Lindsey’s steady, positive recovery comes at the same time as troubling news for the Bingham family regarding the eldest child, 13-year-old Sierra.

Both girls have been diagnosed with dilated cardiomyopathy, or DCM, an enlargement of the heart muscle that causes it to weaken.

Sierra received a heart transplant in 2006. On Wednesday, she was admitted to the cardiovascular ICU following a routine test that showed abnormal results.

Doctors now believe that Sierra’s body is building up antibodies against the transplanted heart. Jason said the organ might have already sustained some damage.

Sierra was discharged from the hospital Friday and Jason said she is energetic, wanting to do her homework and go to sports practice. But a team of physicians will soon meet to chart what steps to take and how aggressively to proceed.

“I’m going to tell you, that’s some pretty hard news,” Jason said.

“This is a pretty blunt reality of what a heart transplant is,” he continued. “It’s ongoing, with lifelong complications.”

The youngest of the five Bingham siblings, Gage, 4, also has been diagnosed with DCM. The other two children are healthy but bear the genetic markers for developing the disorder. Genetic tests became more exact only in the last few years, and scientists just recently confirmed that DCM in children regularly has genetic links.

When Sierra was diagnosed in 2006, the belief was it was an individual case. At that time, the whole family was tested for DCM and none of them had heart problems, including Lindsey. It wasn’t until Lindsey became ill and was diagnosed last spring that the parents realized all their children are in danger.

Throughout the last few days, Jason and Stacy said they’ve received an outpouring of support from both their Palo Alto and Eastern Oregon communities. The Binghams live between the rural Oregon towns of Haines and North Powder.

At one point Thursday morning, while Lindsey was still in surgery, Jason checked his phone. While not all of the voicemails were new, the woman’s voice on speakerphone said, “You have four ... hundred ... messages.”

“It’s humbling, the amount of support we’ve received from back home,” Stacy said. “Never in a million years would I have imagined that kind of support.”

After the cardiovascular ICU, Lindsey is slated to move into a regular room in the hospital. She might be able to leave the hospital in several months

And when she is ready, Jason is going to let her cut the hair on his chin.

As a promise to Lindsey, Jason started growing a goatee in June. He said he wouldn’t cut it until a donor heart was found.

It’s now several inches long. The Binghams intend to make a ceremony of cutting it with the nurses and staff they consider family at the hospital.

“This is Lindsey’s time,” Jason wrote Friday afternoon on his blog, jasonand, “Lindsey’s day.”