Community rallies around baby battling birth defects
HILLS -- Even before his birth, little Kaden VandenBerg was a fighter.
He beat the odds when doctors doubted he'd survive to full-term in his mother's womb, he arrived by C-section in stable condition and he's proved to not just his parents, but to medical professionals as well, that he is a fighting miracle.
Next Saturday, Kaden's hometown -- a place he hasn't yet seen, filled with people he hasn't yet met -- will come together to raise money for him and his family. The benefit begins at 5 p.m., inside the Hills Christian Elementary gymnasium.
Kaden's parents, Susan and John VandenBerg, haven't been home to Hills in more than four months -- not since Susan was airlifted to Mott Children's Hospital in Ann Arbor, Mich., on Sept. 18. It's a 13-hour drive, one-way, from the far southwest corner of Minnesota to the eastern side of Michigan.
"That's our job as parents -- to give him the best chance he can have. They tell us that's here in Ann Arbor, so that's what we're trying to do," said Kaden's mom, Susan.
She and John are staying at the Ronald McDonald House, just a block and a half away from the hospital, while Kaden is kept in Mott's newborn intensive care unit.
Kaden's story begins with his mom's first doctor's appointment 12 weeks into the pregnancy, when early tests failed to detect a heartbeat. An ultrasound was performed, and eventually the heartbeat was heard, but the technician told the VandenBergs a doctor would need to look at the results.
Since this was the couple's first child, Susan said she didn't know what was normal and what was out of the ordinary. Then, when a doctor finally appeared, they learned their baby had multiple health issues.
"The doctor came in and said (Kaden's) heart, liver and intestines were outside his body, and this is not compatible with life," Susan recalled. "We were given an option to terminate, but we said no, we didn't want to do that. We're Christian people, we don't believe in that."
Before the VandenBergs returned home to Hills, they had a schedule set up with their doctor. Appointments would take place every two weeks to check for the baby's heartbeat and monitor its progress.
"We prayed and prayed and prayed, and it kept our baby alive," Susan said, adding that later tests would reveal Kaden's heart wasn't outside his body after all.
Appointment after appointment, the VandenBergs continued to get news from the ultrasound that their baby's heart was still beating. Along the way, they were encouraged to have the baby at Mott Children's Hospital in Ann Arbor, where specialists were better equipped to care for an infant with multiple health issues.
They also learned they were having a son.
"We weren't going to find out if it was a boy or a girl, initially, but we found out because we didn't know if he would live," Susan said. "We didn't know if we would get to meet him. We cried and we prayed and prayed and prayed and prayed. We've been doing that ever since. I don't know how else you would cope with this. The Lord is keeping us afloat here. We live day by day, and we're thankful for every day we have with him."
John chose the name Kaden, and when they discovered it meant "Little Fighter," there was no question it would be his name.
Kaden's due date was Oct. 18, and John and Susan planned to drive to Ann Arbor on Oct. 4 to meet with surgeons and wait for the delivery.
Then, during her Sept. 18 appointment, Susan learned of a new concern -- there wasn't much amniotic fluid remaining around the baby, and doctors thought it would be best for her to get to Ann Arbor sooner rather than later. Fearing the toll a 13-hour car ride could put on mother and baby, Sanford doctors put her on a medical flight that day.
"Our family took off behind us, thinking there would be a baby soon," Susan said.
However, doctors in Ann Arbor wanted to hold off delivery as long as possible, to allow Kaden's lungs to further develop.
"Every day they'd do monitoring for a possible C-section," she said, adding that she wasn't allowed to eat until testing showed the delivery would be delayed another day.
"I learned that when they told me I could eat, I better eat," she said with a laugh.
That's how it went for the next week. Then, on Sept. 27, the C-Section was performed.
Kaden was born with a cleft lip and palate, diaphragmatic hernia (a hole in the diaphragm), omphalocele (intestines outside his body), a double outlet right ventricle heart defect and two holes in his heart.
Susan explained all these issues in her Christmas letter, following it up with, "He also has a fighting spirit, beautiful eyes and a strong hand grip. We don't know why our son has all of these things, but God does."
Immediately after Kaden's birth, doctors began pushing his intestines in his body. Each day, they would work to get them in further until it began affecting Kaden's lungs.
Eventually, Kaden will undergo surgery to close up the muscle over his intestines, but before that happens, doctors first want to fix his heart defects. The earliest the heart surgery will be performed is when Kaden reaches six months of age -- which means two more months of waiting in the Michigan hospital.
Throughout the ordeal, Susan said both her and John's employers have been understanding. John drives cattle truck for Thier Trucking near Adrian, while Susan is a pharmacist in the Sanford Children's Hospital in Sioux Falls, S.D.
She plans to return to work on a part-time basis on Feb. 14, and will alternate with John so at least one parent remains with Kaden.
"We're trying to pursue all our obligations," Susan said. "We still need to keep our life going back home, too."
Today, Kaden remains on a ventilator and a trachea tube. His chest tubes have been removed, and the family takes it one day at a time. They make sure to hold him once a day, and although it can be a "production," Susan said they make sure he has that connection.
"He likes it when we are by his side and talk to him and sing to him," she said. "We have good days and bad days in the NICU. He's come a long ways, but we still have a ways to go. We feel God is definitely with him or he wouldn't be here now."
What gets John and Susan through each day are the visits they've had from family and the untold number of cards, letters and prayers coming from back home. John grew up in Hills, while Susan was raised on a farm by Wilmont.
"All the while we've had so many churches praying for him," Susan said. "We believe greatly in the power of prayer and that's what's carried us on here."
According to Kaden's nurses, the VandenBergs get more mail than most people who live in Ann Arbor.
"We come from a small community and they've been very good for us," Susan shared. "We didn't expect there to be a benefit. Everyone's been very supportive -- the prayers and cards are wonderful."
The benefit for the VandenBerg family will begin at 5 p.m. next Saturday, Feb. 9, at the Hills Christian Elementary gym, 501 Central Ave., Hills. John hopes to return home for the event.
Food serving will begin at 5 p.m., with hot dogs, barbecue and coneys on the menu, along with chips, salad, pudding, bars/cookies and a drink for a free-will donation.
Charla Sandbulte, Hills, is coordinating the event, which also includes both a live and silent auction.
"The best part of all of this so far is that everyone has been super good," she said. "Everything has been donated for the meal, for all the different things, so 100 percent of the money is going to John and Susan."
Sandbulte said she's hoping the fundraiser will generate $15,000 to $20,000 for the family.
The live auction includes vacation packages, including a Sweetheart Weekend at Grand Falls Casino, complete with a couple's massage; a two-night stay at a Black Hills, S.D., cabin; a two-night stay at a Montana cabin; a camping package to Somerset, Wis.; an hour-long plane ride; a hot air balloon ride; a train ride with a train engineer departing from the Luverne depot; and meat packages that range from a quarter of beef to a whole hog, among numerous other items.
Daily Globe Reporter Julie Buntjer may be reached at 376-7330.