BIWABIK — Photos of a tiny Avery Rose documenting her first months of life adorn her family’s Biwabik home. A big, sweet smile lights her face, even in pictures showing tubes protruding from the child’s teeny body.
Avery, who turned 10 months on Wednesday, looks up curiously while playing with her mom on the living room floor. Before long, she is all smiles.
Visitors are not a common sight for the baby, who spent the majority of her life so far in a hospital and is quarantined to protect Avery from illness.
But there is little to indicate all she has been through, aside from a gastrostomy tube for nutrition that runs from her belly to a backpack containing formula that dwarfs her little frame.
Avery’s parents, Jordan See and Austin Benz, follow her around the house carrying the backpack so she has freedom to crawl.
She is still very small for her age, just 13 pounds and 24 inches tall — about the size of 3-month-old. But she has graduated into 6-month clothing, says her mom.
On this recent day, Avery Rose Benz is garbed in a winter sweater and black-and-white patterned leggings with a matching headband.
She will be wearing black-and-white attire today, too, to remind and educate everyone of the condition that led her family to Philadelphia for her birth and the surgeries that followed.
At just 14 weeks gestation, Avery was diagnosed with omphalocele.
The rare defect occurs early in pregnancy when the abdominal cavity fails to form normally. Abdominal contents then protrude on the outside of the body, contained only by a thin, clear membrane called an omphalocele sac.
In Avery’s case, she was born with what is classified a “giant” omphalocele — her liver, intestines and some of her stomach extended outside her bitty belly in the rounded sac.
Giant omphaloceles occur in only about one out of every 10,000 live births, and the defect requires staged surgeries to return the abdominal contents to their proper place.
Today is International Omphalocele Awareness Day, part of Birth Defect Awareness Month. Its awareness ribbon is a black-and-white cow pattern, which originated from a group called Mothers of Omphaloceles (MOOs).
Avery and her family are asking the community to wear black and white today to raise awareness — and to post photos of themselves in the clothing on the All In For Avery Facebook page.
Baby Avery and her parents returned to the Iron Range in late-October, after 202 days at Children’s Hospital of Philadelphia, which “sees the most cases of omphaloceles in the world,” See said.
Family and friends had found a cozy house in Biwabik for the young couple, who previously lived in a Mountain Iron apartment.
Since arriving home, Avery “has been thriving,” said Benz, 24.
She is comfortable in the house compared to the hospital,” said See, 21. “She has grown so much. She is pulling herself up to stand.” While Avery is small, “she is pretty much on-track.”
Feedings through the G-tube, previously on a 23-hour drip, are down to four roughly hour-long sessions daily and continuous at night. Avery has a “two-hour break” in between meals, which is beneficial, See said, because “she’s super busy.”
Avery loves listening to music and “shaking her booty,” See smiled. The child is the first grandchild on both sides and is quite spoiled with toys, but empty water bottles are her favorite plaything, followed closely by anything not a toy; the television remote, cups and pens in particular.
There are still many medical appointments — once a month with a local pediatrician, monthly shots to protect against the respiratory syncytial virus (RSV), and infant physical, occupational and speech therapy to assist with development.
Avery’s sixth surgery of her young life will take place in April in Philadelphia to further adjust her lower intestinal tract, with an additional operation six to eight weeks later.
While at the hospital she will be evaluated by physicians in nearly every speciality, See said.
There will likely be future trips to Philadelphia, but some follow-up may be scheduled with a physician at Children’s Minnesota in the Twin Cities who was trained at the eastern hospital.
The choice to go to Children’s of Philadelphia ultimately saved Avery’s life, say her parents.
When See was 33 weeks pregnant, she and Benz decided to visit the hospital most-versed in omphalocele. “It’s like working with a bunch of scientists,” See said.
There, Avery’s family learned she also had a tethered spinal chord and a heart defect called transposition of the great arteries, which changes the way blood is circulated in the body.
The combination of a giant omphalocele and the heart problem had only been documented in literature four times, See said. The hospital had never treated a child with both, and the addition of the tethered chord was a group of abnormalities virtually “unheard of.”
Chances of survival, the family was told, were slim. But the hospital was the most-equipped place to handle the situation.
And on March 30, 2018, the 4-pound, 12-ounce newborn was delivered via a special C-section procedure that protected against omphalocele rupture.
At just 4 days old, the tiny baby underwent open heart surgery. Her weight dropped to just barley 4 pounds following the surgery, and Avery remained in the cardiac intensive care unit for a month.
Her tethered spinal chord — a neurological disorder caused by tissue attachments that limit the movement of the spinal cord within the spinal column — was repaired at 3 months.
She additionally underwent surgery to begin configuring her insides correctly and to close the omphalocele.
“Beep, beep, beep.” The feeding is finished, and Benz frees Baby Avery from what her parents have dubbed the “leash.”
Eventually she will be fitted with a small backpack her size, allowing Avery to roam without restraints during feedings.
The ultimate goal is to remove the G-tube. But Avery must start eating first, and so far she has not been a fan. That’s to be expected for a child tube-fed at the start of life, See said.
“She does like the flavor of some foods.” Sometimes they even seem to “surprise her.”
Avery could possibly have the G-tube until she’s 5 or older. But “we are hoping for the best,” See added.
The baby also has difficulty keeping nutrition down, even with the G-tube. Benz rushes Avery into another room on this recent day, and See follows. Soon they return with the little one. Crying and coughing moments earlier, Avery is back, in no time, to grinning and trying to talk.
Avery is very social and happy, See says. So much so, the mom often calls her “Happy Baby.”
“It’s fun to think about the future” for Avery, See added. “I think she will be the most social person.”
But “there are a lot of ‘what ifs.’”
Avery has abnormalities of her vertebrae and ribs. “Her ribs are almost all fused,” which could eventually impact her lungs and cause breathing problems. She may also develop scoliosis, a curvature of the spine.
“We are taking it day by day,” See said.
Since returning to the Range, Benz has found a couple local jobs, and See stays home to handle feedings and Avery’s other needs.
The community has reached out via benefits and prayers, and the family is most grateful.
“I can’t say ‘thank you’ enough to the entire community. The support has been so crazy-wonderful,” See said, adding that she is sure prayer has “played a major role” in how well Avery is doing.
“I wish I could send out thank yous and hug every person who has supported us,” she said.
But that would be many, many hugs and an awful lot of notes.