The boy with the 40-year-old kidney

From the moment he entered this world, little Gabriel and those around him faced an uphill battle to keep him from leaving it. He was diagnosed with kidney failure. Doctors gave the infant less than a 5-percent chance of winning the battle.

But Gabriel did win, with a kidney donated by his father, Air Force Tech Sgt. Don Broghammer, and assistance from the Children’s Organ Transplant Association (COTA), which helped raise funds for transplant-related expenses.

Today, Gabriel is a lively 3-year-old who happily displays a newfound strength in a photo featured in COTA’s 2009 calendar. Only two years ago, he endured multiple surgeries and weeks of hospitalization, with feeding tubes and medication a staple of his daily routine.

Gabriel’s mother, Christine, knew from tests during her pregnancy that her baby would face various medical challenges. He underwent his first surgery – to address bladder problems – while he was still in his mother’s uterus. Gabriel’s parents, who live in Rapid City, S.D., took him to large urban hospitals where they thought doctors could best respond to the medical complexities they faced during the delivery and subsequent procedures. Next, Gabriel faced life-threatening kidney problems. At 4 months old, he started dialysis treatment to remove the waste products his malfunctioning kidneys were unable to handle.

His parents learned at the hospital how to administer the treatment, and they were able to take him home, where the dialysis continued for 10 hours each night. They also had to feed him through a tube. The schedule was so demanding that Christine had to quit her teaching job.

But Gabriel failed to grow enough, a common problem for children in similar circumstances. So his parents decided to pursue a transplant.

Through friends with a child who had kidney failure, the Broghammers learned that the University of Minnesota Medical Center was a leading provider of pediatric organ transplants; they decided to take him there.

Testing determined that Don was a good match, and on Jan. 9, 2008, doctors performed a successful transplant of a kidney from father to son.

The costs of the surgery and related expenses are enormous. Gabriel is “a $3 million kid,” Christine says. “I was scared we were going to go broke paying all these bills.”Before the transplant operation, the Broghammers turned to COTA for assistance. The nonprofit organization helps children and young adults with fundraising and support for the families. During fiscal 2008, the organization raised nearly $4 million for transplant-related expenses and helped 111 new families.

COTA also promotes donations of organs, bone marrow and tissue. Patients up to 21 years old who need or have had a life-saving organ, bone-marrow, cord-blood or stem-cell transplant are eligible. COTA works with individuals of any age to help with transplant-related costs if the need is caused by a genetic disease, such as cystic fibrosis or sickle cell anemia.

COTA’s assistance comes in many forms. The organization trains and organizes volunteers in patients’ home communities, assisting them in planning successful fundraising events and activities. COTA also helps spread the word through local media and Web sites, and serves as a trustee for the funds that are raised.

Since 1986, COTA has worked with more than 100,000 volunteers throughout the United States to organize fundraising activities and donor-awareness events, raising nearly $50 million for patients.

In addition to the cost of a transplant, bills include medication to prevent organ rejection, recipients’ and families’ travel to medical centers, families’ lodging and food, follow-up lab tests and sometimes a subsequent transplant, which children like Gabriel – who receive organs from older persons – may need someday.

The costs of transplant operations may not be fully covered by health insurance; policies vary widely. Many insurance companies have limits on the amount of medical coverage they will provide over a lifetime. Some have caps on the amount they will pay per year or per incident. And most plans have deductibles, which may be 20 percent or more of the transplant’s costs, in addition to co-payments that patients are charged for health-care services.

According to COTA’s 2007-2008 annual report, “(N)o coverage pays all costs associated with a transplant. Even with insurance, very few families have the resources to pay expenses related to a transplant.” In some cases, fundraising has not been able to cover costs, and COTA has helped by providing extra money beyond amounts raised.

Among those helping to provide COTA with funds is The American Legion, which has contributed about $250,000 at the national level – and from individual posts – since 1989, said Rick Lofgren, COTA’s president. The Legion’s Child Welfare Foundation regularly awards grants for COTA projects. In 2009, it provided $40,000 to the organization for its Volunteers in Action program.

Among Legionnaire supporters is Tony Lori, who for more than 20 years has been placing coin-collection jars across New Jersey and has raised more than $80,000, mostly in change. The Legion also tries to increase the number of organs available for transplant.

“A lot of our work for COTA has helped make the public aware of the need,” said Robert Caudell, executive secretary of the Legion’s Child Welfare Foundation.The Legion’s National Executive Committee decided in May to formalize its relationship with COTA by approving a resolution for the Legion to “adopt and participate in the programs” of COTA, and encourage its departments and posts to work with and support COTA’s fundraising efforts.

Across the country, COTA-assisted friends and neighbors stage events on behalf of the patients. In Wisconsin, volunteers turned to “cow-chip bingo” to raise funds. After a high-school football game where they sold raffle tickets, they released a cow onto a grassy playing field marked with numbered squares. She wandered the field looking for the right spot, and when nature called – B-I-N-G-O! A lucky win for the person who bought the ticket for that square. Concession sales and face-painting in the high school’s team colors contributed to a total day’s take of about $10,000.

In New Jersey, a golf outing netted more than $20,000 through 120 registered golfers and the help of sponsors, each of whom had a sign advertising its services at one of the 18 holes. Wagers for holes-in-one, longest drives and “closest to the pin” – along with merchandise sales and an auction – contributed to the total amount raised.

Car washes, dodgeball tournaments and pets showing off their Halloween costumes have also helped bring in money during fundraising efforts. “Our average campaign raises about $40,000,” Lofgren says. Much of the money goes for travel and lodging associated with the medical care.

Financially, the Broghammers were more fortunate than many organ recipients. Most of the costs were covered by Don’s military benefits – he’s stationed at Ellsworth Air Force Base in Rapid City, S.D. – and the Medicare benefits for which Gabriel was eligible. As a result, about $15,000 raised by the community could be used for travel expenses and for medicine. Christine says that Gabriel’s medicine is rather expensive; therefore, they have to make the necessary co-payments.

“We feel very lucky to have had so much help throughout the years,” Christine says.Although Gabriel’s progress has been substantial, he still faces some serious medical problems. He has bladder issues, and though he eats meals with his family, the little boy – who didn’t eat or drink for a year, except through a feeding tube – still gets his medicine and extra liquids through a tube.

Nonetheless, his relieved mother, who knows she has faced much more anxious times in the past, said, “He’s a normal little boy.”

Gabriel is likely to need a second transplant sometime in the future, since he has a 40-year-old kidney, Christine said.

Other children will face that same future need, and COTA pledges to be there again for them. “We always say, ‘Once a COTA patient, always a COTA patient,’” Lofgren said.

For Gabriel Broghammer and his parents, that’s reassuring. “Right now we’re good,” Christine says. But, she quickly adds, “It’s nice having a cushion there.”  Margaret Davidson is a freelance writer living in Wisconsin.