Inside Out: Fear strikes when Jefferson couple learns baby will have rare birth defect

Inside Out: Fear strikes when Jefferson couple learns baby will have rare birth defect

STATE JOURNAL SPECIAL REPORT | PART 1 OF 2

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Jodi and Gabe Alwin held hands as a technician glided a sensor over Jodi's belly.

Married a year and a half, the couple hoped for their first baby together. Jodi miscarried twice, at eight weeks and 11 weeks. This pregnancy was at week 20, long enough for an ultrasound.

It's a boy, the technician said, but then stared at the screen. I think I see something, she said, leaving to bring a doctor into the room.

Your baby has gastroschisis, the doctor said. 

Gabe let go of Jodi's hand. Jodi started crying.

The baby's intestines, coiled like a garden hose, were growing outside his body through a hole near his umbilical cord. The birth defect, rare but on the rise, may be more common among families in rural areas such as the Alwins, who live in Jefferson, about 30 miles east of Madison.

Doctors in Madison wonder why they're seeing many cases of the defect in southern Wisconsin. One doctor asked the state to investigate, but that would be costly, officials say.

Nobody knows what causes the problem, which is not considered hereditary. Theories include diet, drugs, smoking, drinking and infections. Some studies suggest pesticides such as atrazine may be involved.

Many babies thrive after surgeons put the intestines in the body after birth. Others suffer from malnutrition and a lifetime of complications. Some die.

Jodi and Gabe left the ultrasound room in shock — not because they had never heard of gastroschisis, but because she'd had a baby with it before.

>> Whisked away after birth

Born in Milwaukee, Jodi moved to Jefferson with her family when she was 15.

She waited tables at a restaurant, where she met Dan Reynolds. They had their first child, Kayla, when Jodi was 16.

Two years later, she was pregnant again. At the 20-week ultrasound, doctors said the baby had gastroschisis ("gas-tro-SKI-sis").

Jodi was a nursing assistant, and her mother a nurse. But all they knew about the defect was that a local child with it battled infections from a feeding tube. The child died a few years later.

When Jodi and Dan's baby Daniel was born, the family's pastor baptized him right away. Jodi didn't get to hold him before doctors encased his intestines in a sterile bag and brought him to the operating room.

Daniel, wrapped in tubes and on a ventilator for days, was in the hospital for five weeks.

Once he got home, he developed normally. Today, the talkative 13-year-old has what looks like an unusually large belly button. He feels an occasional twinge of pain near his waist, "a little worse than being pinched," he said. 

But he plays baseball, basketball, football, golf, hockey, soccer, volleyball — almost every sport imaginable.

>> The defect reappears

After Jodi and Dan had a third child, Samantha, they divorced.

Jodi met Gabe Alwin, who had a son from a previous relationship. They married in Las Vegas and honeymooned in Los Angeles — her first time on a plane and to the ocean.

They wanted a child together, but the miscarriages made it seem like that would never happen. When Jodi learned in September that she was pregnant again, she was extra careful to eat well and take prenatal vitamins. She drinks and smokes occasionally, but not while pregnant.

In the ultrasound room, four days after Christmas, Jodi and Gabe were hopeful but guarded. Then the doctor's news — another baby with gastroschisis — brought a flood of anxiety:

Would this baby turn out OK like Daniel? Or would this one not survive?

>> Tension builds

Jodi was due May 16. Doctors say it's safer to deliver gastroschisis babies early, so they scheduled the birth for May 2.

The weeks beforehand were tense between Jodi, 32, and Gabe, 36.

She wanted to get the baby's room ready, to create excitement.

"I'm very optimistic," she said in April. "You just think in the back of your head, 'It's all right.'"

He didn't want to lift a paint brush in case the baby died before making it home.

"I have more of a wall," he said. "I'm trying to keep that distance."

They put off choosing a name. Gabe didn't want to make the baby seem real. But finally, they picked one: Elijah, from the Bible.

>> Delivery day

At 7:30 a.m. on May 2, Jodi and Gabe arrived at St. Mary's Hospital in Madison.

As a nurse prepared Jodi for labor to be induced, an uncomfortable memory emerged: When Samantha was born, Jodi's uterus inverted as the placenta came out. Jodi lost a lot of blood and needed emergency surgery.

"She almost died," Gabe told the nurse.

About 9 a.m., Dr. Mary Haag gave Jodi a pill to start contractions. Hours went by and no movement came. Haag gave her another pill, but progress remained slow.

By 11 p.m., after Haag put a drug in Jodi's intravenous line, labor took off.

Elijah, born at 11:24 p.m., was healthy and pink — 7 pounds, 8 ounces. But nearly all of his purplish intestines were sprawled across his stomach, an easy target for infection or inflammation.

Haag, an obstetrician, carried the boy to an adjoining room. Dr. Laurie Hogden, a neonatologist, put a bag around his intestines and a tube down his mouth to suck up fluid from his stomach. Too much fluid and he could choke.

"He looks really, really good," Hogden said.

Jodi was fine, too. Hogden let Jodi and Gabe hold Elijah for a minute before taking him to the neonatal intensive care unit.

>> Starting the repair

Dr. Peter Nichol, a pediatric surgeon at UW Hospital, arrived to do what is done today on most babies with gastroschisis: He stuffed the intestines into a silo — a clear sheath of silicone that keeps out germs.

Then Nichol hung the silo from a stand above Elijah's bed. The goal was to let gravity ease the intestines back into his abdomen for a week or longer before finishing the job through surgery.

As faint beeps broke the silence in the room, the cylinder loomed over the newborn's sunken midsection.

Jodi and Gabe came to the bedside. They caressed their baby's arms, his fingers, his toes.

"He's beautiful," Jodi said. "I'm just really happy because he looks great."

A few hours later, as the joyful parents slept, Hogden called Nichol.

His intestines look a little gray, she said.

The organs could be dying, Nichol knew. He rushed back to the hospital and took Elijah to the operating room.


This is the first installment of a two-part special report. Read the second installment of this series here: "Inside Out: After surgery, Jefferson family begin anxious watch over son born with gastroschisis"

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