Aimee McBain was 31 and working as a plus-size model when she found out she was pregnant with her first child. She and her husband immediately started dreaming about life with their new baby.
That is, until a routine ultrasound found that their baby—a girl—had an extremely rare and dangerous birth defect called giant omphalocele (um-fal-o-seel). The condition is caused by a defect in the abdominal wall and leads some organs to remain outside the abdomen while the fetus is growing. It can be mild, with only some intestines outside the abdomen, or extreme, with the major organs in a sac outside the body.
Giant omphalocele occurs in one out of every 10,000 live births. Only about 40 percent of these babies survive. Specialists told the couple that their best option was to terminate the pregnancy. But McBain and her husband, Ron Mencl, were not ready to accept that choice.
Their desperate search for an alternative led them to St. Peter’s University Hospital in New Brunswick, where they met John Gallucci, a surgeon who has specialized in pediatrics for ten years (and is one of New Jersey Monthly’s top doctors).
“The first time we met Dr. Gallucci was the first iota of hope we had that our baby could survive,” says McBain. “It was so great to finally hear something a little positive.”
Gallucci knew there were high risks involved with bringing a baby with giant omphalocele to term—especially in a case as severe as McBain’s baby, whose bowel, liver, spleen, most of her colon, and some of her stomach were affected.
A major difficulty in repairing omphalocele is the abnormally small size of the baby’s abdomen. With major organs developing outside the body, the abdomen does not expand to accommodate them—a condition known as loss of domain. This was the case for McBain’s baby.
“When Aimee came to me, she was terrified. She’d been to a few different hospitals and doctors, and they all said she had a very bad case of giant omphalocele and that she should abort,” says Gallucci, 48. “But working in a [Catholic] hospital like St. Peter’s, we’re on the side of trying not to let things get to that point. I couldn’t even think of telling these people to abort their baby.”
In addition to a risky birth and surgery, other potential complications were anticipated. Babies with giant omphalocele tend to have other serious birth defects. Fortunately, the next round of medical tests brought good news: The baby appeared healthy in every other way and had no chromosomal abnormalities.
Gallucci developed a treatment plan. The baby would be delivered via a planned caesarean section and kept in the neonatal intensive care unit until it was safe to begin working on her. Then, Gallucci would try to squeeze the organs into the baby’s body through a hole in the abdominal wall, a procedure akin to pushing toothpaste out of a tube. It was a high-risk, high-reward plan. Gallucci had performed the procedure several times, including once at Morristown Memorial Hospital.
“In the right hands, and with the right approach, you’re giving the child a chance,” says Gallucci. “In this kind of situation, you’re going to ride a very rough roller-coaster, and in the end you may lose. Or you may have a beautiful child.”
To the immense relief of her parents and doctor, Olivia Eleanor Mencl was born June 14, 2006, five weeks early and healthy—except for the large sac of organs outside of her body, attached to the base of her umbilical cord.
“When she was born, I heard her make two little peeps,” remembers McBain, who lives with her husband and daughter in rural Washington Township in Warren County. “Then, the medical team whisked her away.
“The toughest part was not getting to hold her for four weeks. I was devastated when I first saw her. She looked completely healthy, except for her tummy. I knew there were no guarantees that she would make it.”
Gallucci immediately went to work, first removing the sac containing the baby’s organs. Then he built a silo of mesh to cover the organs, which he suspended over the baby’s bed with elastic bands, allowing the organs to continue to function.
One day after Olivia was born, Gallucci began twisting the mesh silo downward to slowly push the organs into her body. He did this a little every day over the next week and a half—it took about ten minutes each time—until the bag was down to Olivia’s skin. If he tried to push too much in at once, she could have died, he explains.
Olivia was sedated and paralyzed during this period so that she would not feel any pain and her muscles would be relaxed enough to accept the organs without resistance. After each session, Gallucci used umbilical cord clamps so that the organs would not pop back out.
“There was almost no space inside the abdominal cavity,” Gallucci says. “I had to create space for the organs.”
Gallucci was able to close most of the hole left in Olivia’s abdomen and used a tissue-regeneration product called AlloDerm to finish sealing the area. The AlloDerm had to be moistened every hour—including through the night—or the substitute skin would die. “The AlloDerm saved her life,” he says.
McBain and Mencl were by Olivia’s side every day, only leaving to sleep. Their daughter’s recovery was expected to take three to six months, but much sooner they received good news: Olivia was ready to go home after only five and a half weeks.
“Dr. Gallucci surpassed all our expectations,” says McBain. “Olivia didn’t have a bad day in the hospital. And he came to see her every day.”
That compassion for his patients—along with his skill—sets Gallucci apart, says James Gervasoni, chair of the surgery department at St. Peter’s. Gallucci, a father of three and a resident of Somerset County, is one of only about a dozen New Jersey pediatric surgeons.
“Dr. Gallucci is a very dedicated physician who takes extra care with his patients. He seems to have an uncanny way of doing the right thing for them,” says Gervasoni. “He’s willing to go the extra yard to make his patients comfortable, so they don’t feel like they’re just a client or a patient, but a human being.”
It’s been a long haul for the couple, with all the care Olivia has needed since her birth. Fortunately, Mencl, 48, was between jobs and able to stay home and care for his daughter during her first year.
“I had no experience taking care of a child, but I’m so glad I did it,” says Mencl, who is now the golf course superintendent at Hideaway Hills Golf Club in Kresgeville, Pennsylvania.
Today, Olivia is a happy two-year-old who can outrun her dad and chatters happily with anyone in sight. There is still evidence of her ordeal: Her stomach noticeably protrudes, and she has trouble sitting up straight.
Gallucci was able to get most of Olivia’s organs in place. Her last operation, scheduled for later this year, is to remove the patch of AlloDerm and close the abdominal wall over the organs to eliminate her abdominal-wall hernias.
For Gallucci, it will be the end of a long, challenging road. “It was an extremely personal endeavor for me. I had to pull this baby through,” he says. “I gave it my best shot, and I’m very happy that Olivia is doing so well.”
McBain is hopeful that Olivia will live a normal, happy life. She and her husband already have their daughter’s professional golf career all mapped out.
“I still can’t believe [this] happened to us,” says McBain. “We’ve been so fortunate. We were prepared for the worst, but everything turned out so well.”
Jacqueline Mroz is a frequent contributor to New Jersey Monthly.
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