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John Kelly's Washington

For One Little Boy, a Shot at Normal

By John Kelly
Tuesday, December 14, 2004; Page C10

Delicate operations to correct birth defects are routine occurrences at Children's Hospital. But no case is routine. My assistant, Julia Feldmeier, spoke with the parents of a real fighter:

Theresa Lichtman was 11 weeks pregnant with her son, Jaxon, when she underwent a routine sonogram. She and her husband, Howard, thought it would be a happy occasion; the year before, she'd given birth to a healthy boy, Rand.

_____Children's Campaign_____
Washington Post columnist John Kelly is raising money for the Children's National Medical Center, one of the nation's leading pediatric hospitals. You may make a tax-deductible contribution online anytime between Nov. 29th and Jan. 21st. Thank you for your support.
_____By John Kelly_____
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This time, though, gleeful pinpointing of budding arms and legs was overshadowed by an unexpected -- and alarming -- protrusion: The baby's liver and intestine were pushing through his abdomen and into the umbilical cord.

Jaxon's condition, known as an omphalocele, stems from a partially formed abdominal wall, allowing the organs to push through at the navel. Kurt Newman, executive director of surgery at Children's Hospital, likened it to a jellyfish -- a clear, gelatinous bulge through which the organs are visible. Omphaloceles that include the liver, as Jaxon's did, occur in one out of 10,000 births.

Tied to it are a bundle of potential problems. Thirty percent of omphalocele babies have Down syndrome, and 60 percent have a major structural abnormality, such as a cleft palate or a heart or lung defect.

The Ashburn family was lucky: Tests showed that Jaxon would be chromosomally okay and his heart and lungs healthy.

Three days before Thanksgiving 2003, Theresa gave birth to Jaxon at Holy Cross Hospital in Silver Spring. Twelve hours later, as planned, he was whisked to Children's for surgery.

Omphaloceles such as Jaxon's are often too big to tuck into the body cavity. The abdominal muscles won't stretch around them. In those cases, the organs are pushed in and sealed with skin or a synthetic material. Once the chest cavity has expanded over time, a second surgery is necessary to pull the muscles around the organs.

Dr. Newman and his team watched Jaxon's breathing closely (if it became too shallow, it meant his organs were pushing too much against his lungs) and monitored the color of his legs (if they turned blue, it was a sign that blood wasn't passing through).

"It became very clear that this guy was a little fighter. His organs were under pressure, but he was dealing with it, and everything held up just fine," Dr. Newman said.

Dr. Newman sealed both the skin and the muscles over Jaxon's organs in one shot. He even gave Jaxon a real belly button -- a feature often absent among omphalocele babies.

"We never even knew that was an option," Howard said of the closure. "It was unbelievable."

Jaxon is now, for the most part, a healthy 1-year-old with sparkling blue eyes, thick reddish-brown hair, and a handful of teeth nudging through his gums.

"He's the world's happiest baby," Howard said.

It hasn't been an easy 12 months. When Jaxon was sent home three weeks after his surgery, he wasn't able to breast-feed -- he'd lost his reflex to eat when he was on life support.

Though Jaxon had a nasogastric tube for feeding, Theresa repeatedly tried to feed him orally. He didn't take.

"It was like the milk was just sitting in his mouth," Theresa said. "He didn't know what to do with it."

At 2 months, Jaxon still hadn't learned to eat. Theresa called Sheela Stuart, director of the hospital's speech department, who immediately arranged for Jaxon to begin oral feed therapy.

In April, Jaxon was admitted to Children's for placement of a G-tube, a feeding tube surgically placed in his stomach. The G-tube plugs into a backpack programmed to dispense formula at a set rate. Howard dubs it the "nutrient docking station."

Jaxon was connected to the backpack 22 hours a day. New problems arose: As Jaxon's intestines settled in his system -- his are looped a little differently than normal, so his body is still adjusting, Theresa explained -- he vomited incessantly. He even threw up the G-tube formula.

At 4 months, he weighed 14 pounds. Three months later, he still weighed 14 pounds.

"It's incredibly stressful when you have a baby that you can't feed," Theresa said. "It's the basic thing that a mother does in her first year with a child."

At Children's gastroenterology department, nutritionist Kim Milano and nurse specialist Ginny Gebus have been working with Jaxon to help him keep food down.

"They work so hard there," Theresa said. "No matter how crowded it is, Ginny always gives me the time I need to talk to her."

Since July, Jaxon has put on four pounds. A few days ago, he ate an ounce of food with a baby spoon -- a milestone for him. By spring, Theresa hopes he'll be using the G-tube only at night.

"He's definitely on the upswing," she said. "We can live a normal life now. Life is good."

How to Help

Helping kids live normal lives is what Children's Hospital is all about -- and it's what our annual fundraising campaign is all about. Our goal by Jan. 21 is $600,000. So far, we've raised $68,081.49.

Here's how to contribute:

Make a check or money order payable to "Children's Hospital" and mail it to Washington Post Campaign, P.O. Box 17390, Baltimore, Md. 21297-1390.

To contribute by credit card online, go to www.washingtonpost.com/childrenshospital and click on "Make a Donation." You'll be greeted by a pop-up that takes you right to the donation page.

To contribute by Visa or MasterCard by phone, call Post-Haste at 301-313-2200, then punch in KIDS and follow the instructions.

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