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Family endures an emotional journey

By Amy Flowers Umble, The Free Lance-Star, Fredericksburg, Va.
McClatchy-Tribune Information Services

July 11--Brent Adams saw the box of tissues and knew something was wrong.

His pregnant wife, Angie, had more hope as they waited in the hospital office. But then the doctor walked in, followed by a social worker. Immediately, both Brent and Angie knew the results of their unborn baby's echocardiogram were grim.

Brent Jr., the couple's second child, was diagnosed with truncus arteriosus. It's a rare heart defect where only one blood vessel leads from the heart, instead of the usual two vessels.

The defect could lead to severe circulatory problems and organ failure, but it is correctable with surgery.

For one month, Brent and Angie prepared themselves for a newborn who would need heart surgery.

However, Brent Jr. faced even more problems when he was born on Aug. 14. He struggled to breathe, and was flown to Children's Hospital in Washington, where was rushed into surgery.

Doctors put an emergency tracheostomy in the tiny baby's windpipe. He was born with an extremely small airway, something that wasn't related to his heart condition.

The baby's windpipe and vocal chords were damaged in the initial efforts to open his airway, and to this day, no one knows if he will be able to talk. He does not make any sound when he cries.

The tracheostomy helped baby Brent to breathe, and he was stable by midnight. The next day, he faced more medical hurdles.

His organs shut down, because his heart pumped most of the blood to his lungs and not to other body parts.

Doctors rushed the newborn back into the operating room where they worked to slow the blood flow to his lungs.

Then, he needed kidney dialysis because he was retaining too much fluid. As he recovered from that, he began having seizures and doctors discovered that his brain had hemorrhaged significantly.

"There was one thing after another after another," Brent Sr. said. "At that point, we were like, 'All right, what else can you throw at us?'"

Doctors encouraged the couple to take pictures of their son, despite the tubes and bandages.

Brent Sr. and Angie tried to adjust to their new life in the hospital. For four months, they saw their older daughter Lila, now 5, mainly on the weekends, when grandparents would bring her to visit her baby brother.

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In November, baby Brent's heart was fixed via open heart surgery. For the first time in his short life, he had no complications. He recovered from the serious operation in three weeks.

Shortly before they left the hospital, Brent Sr. and Angie learned that their son was also battling another illness: DiGeorge syndrome.

Doctors knew it was likely that baby Brent had DiGeorge--the rare condition often causes heart defects such as truncus arteriosus. But in the battle to save the infant's life, they hadn't initially tested him for DiGeorge.

The disorder can range from mild, where patients exhibit few symptoms, to extreme, where patients have compromised immunity and developmental delays.

Brent Jr. fell into the severe range. Tests showed he had no T cells, which play a key role in immunity. He would be unable to fight off even the common cold. A simple flu bug could kill the infant.

He was released from the hospital in November, months after his birth. The family settled into home in Stafford County, where they live with Angie's parents. The couple was trying to buy a home of their own just before learning about baby Brent's heart condition. They've put those plans on hold as they face mounting medical bills--and the loss of Angie's income as a paralegal.

She can't work, even though insurance covers 16 hours a day of in-home nursing, because it often takes two people to care for baby Brent.

Living with Angie's parents has come in handy, too, when late-night medical emergencies arise. Three times, Brent Sr. and Angie have had to call 911 and rush the baby to the hospital. With grandparents there, Brent and Angie don't have to worry about Lila as they grab the bags they keep perpetually packed for hospital trips.

Baby Brent mainly stays in his cheerful nursery, because the risk of catching a virus is so great.

On the door to the nursery, a ceramic star reads "A son is heaven sent." A colorful picture drawn by Lila is taped next to a chart labeled "Brent's medications," which charts the schedule for seven different drugs.

A few pale purple masks hang on the doorknob, for people to don before they enter the room.

There, the now 11-month-old cheerfully plays with toys and listens as Lila reads "Brown Bear, Brown Bear" repeatedly.

His parents play with him, using rattles, balls and stuffed animals stacked in a cheerful green bin.

Baby Brent's parents and little sister also teach him basic sign language words, using a colorful children's book of signs.

Angie puts her thumb on her chin and wiggles her fingers. "Mama," she says.

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Lila takes the book to remind herself how to sign "sister." She shows Brent, then puts out her thumb and little finger, to say "I love you."

Lila watches carefully as her parents take care of her baby brother. She often pretends her own baby doll has a tracheostomy.

"She's amazing through this," Brent Sr. said. "She puts on an amazing front, but deep down I know it hurts her."

It's been seven months since the last call to 911, and the family is hopeful that baby Brent is improving. They hope to take him to Duke University Hospital this summer, for an experimental surgery that could help boost the baby's immune system.

After that, they hope things settle down for a while before Brent Jr. needs another heart surgery--he'll continue to need operations as his heart grows.

"We are all so excited for what the next few months have in store for us," Angie recently wrote on the family's blog.

"You never truly know what it's like to go through something so extreme like this until you have to face it. There's nothing that can prepare you for the ride, but love can get you through."

Amy Umble: 540/735-1973

aumble@freelancestar.com

WANT TO HELP?

Proceeds from a family-friendly event this weekend will help the family pay for medical expenses and other bills associated with caring for baby Brent. Here are the details:

WHEN: Saturday, July 12noon to 6 p.m.

WHERE: Fredericksburg Fairgrounds

HOW: Tickets are $5 in advance, $8 at the door; buy tickets at Brock's Riverside Grill, Virginia Mattress Direct or online at: sunshine event.eventbrite.com.

DETAILS: The event will feature live music, moon bounces, face painting, games and prizes, a live auction, a corn hole tournament, a barrel train and more.

___

(c)2014 The Free Lance-Star (Fredericksburg, Va.)

Visit The Free Lance-Star (Fredericksburg, Va.) at www.fredericksburg.com/flshome

Distributed by MCT Information Services

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