MOUNTAIN IRON, Minn. (AP) - Jordan See and Austin Benz - garbed in matching shirts depicting a sweet little cow with a Band-Aid on her tummy and pink bow on her head - chat on a recent day about an uncommon condition of which they are becoming experts: Omphalocele.
When the young couple, expecting their first child, initially heard the term, “I could barely pronounce it,” said See, now 28 weeks pregnant, at their Mountain Iron apartment.
“All in for Avery,” reads the lettering under the cow on their black-and-white attire.
Little Avery Rose has not even made it into the world yet, and already she is off to a rough start.
Avery, due to be born in April, was diagnosed at just 14 weeks gestation with the rare birth defect called omphalocele.
Omphalocele occurs early in pregnancy when the abdominal cavity fails to form normally, See explained. Abdominal contents then protrude on the outside of the fetus’ body, contained only by a thin, clear membrane called an omphalocele sac.
In Avery’s case, the liver, intestines and some of the stomach are outside of her body in the sac, Mesabi Daily News reported .
The condition is so rare, See said, that her longtime local obstetrician has never dealt with it, and the expectant mom is receiving care at the University of Minnesota’s Maternal-Fetal clinic in Minneapolis.
It’s estimated that small omphaloceles occur in about one out of every 5,000 pregnancies and large, or “giant,” omphaloceles in one out of every 10,000.
Babies born with omphaloceles are prone to heart, lung and chromosomal defects, the latter of which is more greatly associated with small omphaloceles. “The other issues can be so devastating,” See said.
Giant omphaloceles tend to be more “isolated” and less connected with abnormalities. And that seems to be the case with so far with Avery, whose sac is classified as giant because of the number of organs in it.
“That’s what we are hoping and praying for,” See said.
Right now it’s just a huge waiting game, said the couple, who will learn more about their daughter’s prognosis once she is born.
See is also making it her mission to raise awareness of the defect. The 20-year-old belongs to a Facebook group called Mothers of Omphaloceles (MOOs). There are only about 3,000 members worldwide, she said.
The awareness ribbon for omphalocele is black-and-white cow print - thus the cow depiction on the shirts, which will be sold to bring attention to the rare condition. See said the couple partnered with Ink’d Graphix Plus in Virginia, where the public can purchase “All for Avery” attire at www.igp321.com/Avery through Feb. 18.
International awareness day of the defect is Jan. 31, and Gov. Mark Dayton recently proclaimed the day as Omphalocele Awareness Day in the State of Minnesota after being contacted by See’s mother, Virginia City Administrator Britt See-Benes.
See said they hope everyone will wear black and white on that day to show support for all families affected by the condition.
The cities of Virginia, Aurora, Biwabik and Hoyt Lakes have also declared Jan. 31 as Omphalocele Awareness Day.
The official state proclamation reads in part: “Many people born with Omphaloceles go on to live happy, healthy lives, despite the challenges they may face .”
That is what the family is wishing for Avery, whose parents say they feel certain she is a fighter.
However, “it’s been really tough,” See said. “It’s been a roller coaster.”
The couple learned “something wasn’t right” during a routine ultrasound at 12 weeks, See said.
Two weeks later, the omphalocele diagnosis was confirmed.
“It was super devastating,” See said, especially when “doctors prepared us for the worst.”
University of Minnesota specialists are currently working with four cases of omphalocele, said the couple, and the Minnesota Department of Health estimates about 11 babies are born with the defect each year in the state.
There is currently no real known cause, said See and Benz, who have been told it’s essentially “a fluke.”
See said “at every appointment I feel a little stronger” that Avery will have a more positive outcome.
“We keep getting more good news,” said Benz, 23.
Recent chromosomal blood test results were normal, as was a fetal electrocardiogram.
Up to a third of omphalocele babies have Beckwith-Wiedemann syndrome, an overgrowth disorder that is associated with large organs or parts of the body and a risk of childhood cancer. Many also have spina bifida, a birth defect of the spinal cord.
See said Avery does not appear to have either of those at this time, although imaging has shown she will probably have scoliosis, a curvature of the spine.
An appointment Feb. 5 in Minneapolis, which will include a fetal MRI and comprehensive 4-D ultrasound, should present a clearer picture. “I’m excited about that,” See said.
She currently has appointments with her local doctor once a month and sees maternal-fetal specialists about every three weeks. But soon those visits will become more frequent.
Because See will need to be within a 30-mile radius of the hospital as her due date approaches, the couple will move to the Twin Cities March 10, staying temporarily with Benz’s dad.
The goal is to deliver Avery via C-section at 39 weeks, in early April. What will happen next will then be determined.
Babies with omphalocele usually have underdeveloped lungs, and Avery will most likely be intubated initially. The parents have been told to expect the newborn to spend up to six months or more in the neonatal intensive care unit.
Babies with giant omphaloceles often have a number of staged surgeries to return the abdominal contents into their small bodies little by little since sometimes there is not enough room at first for everything in the sac to fit.
Occasionally, omphalocele closure can’t take place in the neonatal period, and doctors perform what is called a “paint and wait” procedure, in which the sac is painted with an antibiotic cream and covered with elastic gauze. The babies’ skin grows over the sac and surgery takes place anywhere up to 12 months after birth.
“We will have to see how it all plays out after she’s born,” said Benz, who will have to leave his job at L&M Fleet Supply in Mountain Iron, where he has worked only a short time, during the couple’s stay in Minneapolis.
See, who is a receptionist at the Pebble Spa in Virginia, said she hopes to eventually return to the job.
During Avery’s hospitalization, the couple may stay in a boarding room at the hospital or at the Ronald McDonald House, which often has a waiting list.
Aside from the heartache of Avery’s condition, See said her pregnancy has been fairly easy, physically. Emotionally, she and Benz have greatly appreciated the support of family, friends and the community.
Proceeds from this year’s Mardi Gras fundraising party from 5:30 to 8 p.m. Feb. 13 at Holy Spirit Catholic Church in Virginia will go to the couple.
The free event, which is open to the public, will include Cajun food, games, prizes, and live music. Throughout the evening, attendees have the opportunity to donate to family.
Feb. 13 is also See’s birthday, which makes the party extra special, she said.
“We’ve had tremendous support,” Benz said.
“Thank you to everyone for giving us support,” See added. “It’s humbling and a blessing; everyone who has given time and money. There’s been so much support - it brings tears to your eyes.”
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Information from: Mesabi Daily News, http://www.virginiamn.com
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