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Learning to Live with New Lungs

At 15 months old, local child receives rare lung transplant.

Six months ago, if you would have asked Deborah Owens where she would be living, St. Louis, Mo. would have been one of the last places on the list of possibilities.

But the Herndon resident and her husband will be living in the Midwestern city for at least the next year as the couple waits for their 15-month-old son Garrett to recover after undergoing a rare complete pediatric lung transplant at the St. Louis Children’s Hospital on April 23.

"A handful of children his age a year get the transplants as opposed to maybe 50 children who receive a lung transplant each year," said Dr. Stuart Sweet, medical director of the hospital's lung transplant program. By comparison, about 800 adults annually receive the transplant throughout the nation, he added.

There have been less than 50 infant lung transplants — what Garrett received — performed at the hospital since the initiation of the program 17 years ago, Sweet said. St. Louis Children's Hospital has done the majority of the transplants in the country, he added.

The whole situation has shown Deborah and her husband just how much support there is from people who hear about baby Garrett, Owens said. A lot of that help, Owens said, came from her employer of eight years, eAdvocates, a Washington, D.C.-based Internet advocacy firm.

"This whole situation is so big, it’s a lot to deal with," she said, "and it made us realize that it’s not just us in this day-to-day fight. We have a lot of support out there."

SINCE GARRETT was born on Dec. 28, 2005, he has been in and out of doctors’ offices and hospitals, being treated for a number of recurring bacterial and viral infections. The constant infections were frustrating for the Owens family, who, along with their four-year-old son, Liam, have lived in Herndon since 2000.

This past December, the conditions took a turn for the worse and Garrett had to be hospitalized, Owens said.

The family learned that Garrett would need to undergo the procedure in early April after a team of doctors and specialists at Johns Hopkins Hospital in Baltimore could not find the reason for the infections constantly affecting the child’s breathing.

"It’s terrible, it’s almost like [Garrett was] getting sicker just being in the hospital," said Owens. "To get just bombarded by all these infections all the time, and he’s a very strong boy, but that’s just too much for anyone to have to deal with."

After making arrangements, at the recommendation of doctors, to undergo the transplant at the St. Louis Children’s Hospital, which has a longstanding program of pediatric transplants, the Owens received a pager to give them word when a possible donor lung would be available. They had been expected to wait at least several months.

A set of donor lungs had been found for Garrett within 48 hours and the family was on their way on a special medical jet to St. Louis.

Garrett is now recovering at the hospital after undergoing the operation successfully, his mother said. Although he will need to stay near the hospital for at least the next year for monitoring and physical therapy, he is expected to make a full recovery and be able to live an otherwise normal, healthy life with few limitations, she added.

SINCE NEWS BROKE that Garrett needed a new set lungs, Owens has seen a major outpouring of support from her co-workers. They not only set up a Web site to help raise funds to pay for the costly operation but pooled their extra vacation time to make up for the weeks that she has been out of the office caring for her son.

The family does not yet know what the final bill will be for the medical care that their son has received or the level for which their insurance company will cover. They have seen estimates that a final bill could be around $400,000, not including the annual charges of $10,000 for anti-rejection medication that Garrett will have to take for the rest of his life.

It was the thought of these bills that paired with the strong desire to see Garrett overcome the crisis that have brought the outpouring of support from eAdvocates and its other branch consulting firms, said Pam Fielding, president of the company. In 1999, when the company of 14 total employees opened, Owens was the first person in the door, Fielding added.

Aside from pooling their vacation time, the company has also granted her extra paid leave time and is working to find out how Owens will be able to work remotely from St. Louis while Garrett is in recovery.

"There is no doubt that we’re a family and Deborah is at the center of that," Fielding said. "Many of us here are parents, I myself have kids, and we could not bear the idea of a future where Garrett does not have what he needs."

WHILE ACCEPTING financial help was not something that the Owens family was used to at first, the reaction of those who learn about Garrett has been overwhelming and greatly appreciated, she said. Aside from the support from her work, since arriving in St. Louis they have been living in an apartment arranged with the help of the Ronald McDonald House Charities and have gotten support from other families living through the process of having a child in need of a transplant.

"It makes me want to cry, I can’t explain how much it all means to me," said Owens of the attention the family has received, particularly from her co-workers. "We never could have made it through this without them … not just from an employment standpoint from a personal one."

The entire experience has left them with not only a greater appreciation for life, but for the importance of organ donations, Owens said. Where she wasn’t before, Owens said that she has now enlisted to be an organ donor.

And although they will not know the identity of the donor of Garrett’s new lungs, they are incredibly grateful, she said.

"We have often thought about the parents of the donor. They gave us the ultimate gift, they gave our son his life back," Owens said. "I just can’t put it in words how much that means to us."

When she moves back to Herndon following Garrett’s recovery, she will definitely have her job waiting for, Fielding said.

"I’m not running this company without Deborah," she said.