News - Local News

POSTED: Wednesday, Nov. 26, 2008

Lynden couple, twin girls count their small blessings

Bob and Stephanie Brooks savor the small victories that bring moments of grace to hard days and sleepless nights.

Achievements like the 71/2 ounces their daughter Avery gained in two weeks earlier this month, and the 111/2 ounces her twin sister Halley did.

Triumphs such as having the 15-month-old girls, who weigh a mere 12 pounds each, keep down the baby formula that is dripped into their noses and down their throats around the clock. Good things like those hours when the girls are giggling and playing, not fussing or crying.

The young Lynden parents hope for one more happiness this holiday season: Sharing Thanksgiving dinner with Bob's parents and away from the hospitals that have become like second homes since their girls fell ill when they were just over 2 months old.

"It will be so great to start family traditions and memories that don't all revolve around the hospital and, hopefully, for years to come - if that is God's will," said Stephanie, 21.

Last year, they spent Thanksgiving at Seattle Children's hospital, where they remained until the twins were sent home Dec. 23. Nearly a year later, they are awaiting the results of a muscle biopsy that could help solve the mystery of why their only children weigh just half of what they should and why their motor skills are that of a 3-month-old.

JOY, THEN TEARS

The Brookses will learn more when they head to Seattle on Dec. 2.

Doctors suspect the girls have a mitochondrial disorder, which is actually a grouping of at least 40 different diseases. As many as 4,000 U.S. children are born with it each year, according to the Cleveland Clinic.

Mitochondria are energy factories found in almost every cell in the human body, except for red blood cells. Their job is to process oxygen and covert food into energy.

When they don't work, cell injury can occur as well as cell death - causing whole systems in the body to fail, according to the United Mitochondrial Disease Foundation.

Diagnosis is difficult. There is no known cure. Their symptoms can be managed, but the Brookses said their girls will likely not make it out of childhood.

"If it is a mitochondrial disorder, there's no way to avoid it: They are going to die young. It just depends on when," Bob said. "It could be at 3 years old. It could be 18 months. It could be 10 years."

Halley and Avery were born six weeks early but seemingly healthy on Aug. 20, 2007, following their parents' whirlwind romance. The couple met on MySpace in January 2006, when Bob lived in Everson and Stephanie lived in Cape May, N.J.

They married in August the same year.

The twins were home for five weeks after they were born but returned to St. Joseph Hospital in October 2007 because they were throwing up and losing weight. Doctors there couldn't figure out what was wrong, the Brookses said, so they were sent to Children's in Seattle.

The girls had each dropped nearly 1 pound by then. After a series of tests at Children's it was determined they had cytomegalovirus. Referred to as CMV, it is a common virus that attacks most people but rarely causes obvious illness.

But it did for the infants, whose weight hovered between 3 pounds and 4 pounds.

The Brookses didn't know it, but it was among the first of many visits to hospitals as the girls fought off viruses and bacteria, and as they were run through a battery of tests that include hundreds of blood tests.

Doctors were struggling to figure out why the girls continued to be underweight, why they continued to throw up, why their muscles were so weak that, even today at 15 months, they cannot crawl, much less walk.

Bob, 22, and Stephanie document each doctor's visit, each puzzling symptom, each long hospital stay through the online CarePages set up through the University of Washington Medical Center. They also post pictures of Halley and Avery on the site.

Friends and family, such as Stephanie's sister-in-law Samantha Mehl, stay updated and send prayers through the pages.

"It's so heartbreaking, especially when you see the girls," said Mehl, who lives in New Jersey but came out last December to visit the family when they were in Seattle Children's.

WAITING FOR ANSWERS

In a room at St. Joseph Hospital, Stephanie stands at Avery's crib and rubs her daughter's back. Across the room, Bob leans over Halley, who is crying in her crib.

"I know, I know, I know. I'm just trying to fix it," he says soothingly while re-taping the IV that has come undone from her right arm.

The girls are bundled up in blankets, their bodies tiny in their beds. Their hair is blond, their eyes are blue, their faces puffy because their albumin levels are so low that the sugar water dripping through their IVs is leaking into their bloodstream.

"They're not at their best," Stephanie says.

Halley and Avery were admitted to the hospital on Saturday night, Nov. 22, because they had diarrhea and were throwing up violently. They likely had a stomach flu that Bob brought home from his workplace.

They hope the girls will be sent home in time for them to share a Thanksgiving meal, provided that no one in Bob's family is sick.

"When they catch something," Stephanie said, "it's much worse than when a normal kid or adult catches it."

An illness could kill the girls because their immune systems are weak.

The Brookses' lives revolve around their twins. They're both well-versed in the girls' medical needs and procedures. Bob works full time and just earned his associate degree in business through the University of Phoenix's online classes. He hopes to earn a bachelor's in accounting and finance.

Stephanie gets about two to three hours of sleep a day. She's up soothing the children, who don't sleep through the night, or reinserting the feeding tubes that go through their noses and down into their stomachs. Halley and Avery pull out their tubes, which drip food into them 24 hours a day.

"They're taking in enough food to nourish a 3-year-old, yet they just don't grow," Stephanie said.

Despite their hardships, the Brookses don't feel sorry for themselves.

"They're the best babies in the world," Stephanie said.

"We just take it day by day," Bob said. "This is what I was dealt, so I deal with it."

But once, while talking about how they cope, Stephanie's control slipped into a stream of tears.

"My kids probably won't make it to kindergarten. They won't be able to take ballet lessons," she said, crying. "You get attached to these little beautiful beings and you just plan their future."

Other parents talk about what their children will be when they grow up, she said, "and I just hope for tomorrow."

Reach Kie Relyea at kie.relyea@bellinghamherald.com or 715-2234.