Fighting to save a young, fragile life

Last Friday, doctors told Erika White her 22-monthold daughter Emerson might not survive. The girl's lungs, soaked like sponges with her bodily fluids, collapsed after her kidneys failed. It was the latest setback following a complex, three-organ transplant and a lifetime spent with an unnamed disorder.

"I felt like I was floating through a terrible nightmare," White said, talking by phone Wednesday from her daughter's bedside at Nebraska Medical Center in Omaha, where she underwent the transplant. "I felt like my life was slipping through my hands. I couldn't hold on any tighter. I couldn't keep it together."

The hospital staff eventually succeeded in reopening the girl's lungs to keep her alive. But for how long, the Monument mother wonders.

Her daughter's life has hung in the balance since the day she was born, unable to nurse. Since then, most of Emerson's life has been spent in one hospital or another for treatment of a rare metabolic disorder that doctors can't name. Unable to feed on her own, she's gets her nutrition mostly through intravenous tubes, which damages the liver and leads to bloodstream infections.

In February, Emerson was hospitalized. On June 19, the little girl with the big brown eyes received a new small intestine, liver and pancreas in the latest and most dramatic effort to help her.

She survived the surgery, but with Emerson on a breathing machine and dialysis, the Whites worry where their daughter will fall in the statistics.

And, two months shy of her second birthday, the girl has maxed out her $2 million insurance cap. Although Erika's husband, Jim, is a managing partner for Phil Long Ford and Medicaid will pick up some of the costs where insurance left off, they'll likely face astronomical medical bills for Emerson's treatment.

Saturday, the Children's Organ Transplant Association will hold a benefit dinner and auction at the Cheyenne Mountain Resort, and donations are being taken at Wells Fargo locations.

But it isn't just the money that's hangs over the family.

White hasn't slept in her bed at the Monument home she shares with her husband and their two sons, ages 6 and 9. The boys are in Michigan with their grandparents, and she spends about 12 hours a day at her daughter's bedside.

And there's no guarantee that Emerson's surgery will take.

Small bowel transplants are among the riskiest performed, with about half of children not surviving five years, said Dr. Robert Kramer, medical director of endoscopy at The Children's Hospital in Denver, where Emerson was initially diagnosed and treated.

That Emerson was born with a metabolic condition was not completely unexpected. The Whites were introduced to metabolic disorders when their second son, 6-year-old Bradley was born. He was treated at the Metabolic Clinic at The Children's Hospital in Denver for glandular problems. Even today, he is restricted to a low-fat diet, receives a daily shot, takes several medications, and struggles with learning disabilities.

Although the family wanted to try and have another child - the Whites had one day hoped for a girl - doctors said similar complications could arise, and possibly be worse than with Bradley.

The Whites pursued adoption instead, turning to China for the newest member of their family. After about two years of red tape, they were nearing the end of the adoption process when Erika learned the news: She was pregnant.

After a problematic pregnancy similar to her last, Emerson was born, sick and unable to nurse.

She suffered from low blood sugar, a low heart rate and low body temperature. Her inability to process food through her intestines left her in constant need of intravenous feedings. After repeated infections, hospital workers were running out of blood vessels to use in those feedings. Time was running out for her to find nourishment without fatal complications.

And then, on Feb. 7, after Erika White put Bradley and 9-year-old son Collin on the school bus, she went to check on her napping daughter. Emerson was having a seizure and burning with a 105 degree fever. She ended up at the hospital in Omaha, one of only six hospitals to perform liver/small bowel transplants.

They aren't scheduled to go home anytime soon as Emerson recovers from the transplants.

The hope with new organs, said Kramer, is that Emerson will be able to get off IV feeding and possibly find relief from her metabolic abnormalities.

But even with textbook recovery, her life will be full of challenges. The immunosuppressant drugs mean a high risk of serious illness and can, in some cases, lead to cancer.

"They're never out of the woods," White said of her daughter and other bowel transplant recipients. "That's not a term, ever, they use in their whole lifetime."

TO HELP

The Children's Organ Transplant Association will hold a dinner and auction to benefit Emerson White at the Cheyenne Mountain Resort on Saturday. Tickets are $75. Tables of 10 are available for $650. For more information or to RSVP, call Amy Howarth at 1-303-946-6756 or e-mail amyhowarth@comcast.net. Attendees must RSVP by 5 p.m. today. Donations can be made to Children's Organ Transplant Association for Emerson White at any Wells Fargo location. More at www.cotaforemersonw.com