After a normal, full-term pregnancy, following all of the doctors’ orders, routine check-ups and ultra sounds, Dan and Deb Brezgel of Oconomowoc were ready to welcome their third child into the world.
Since they experienced complications with their first two children, the Brezgels wanted to ensure that nothing would go wrong. They scheduled a Caesarean section for April 6, 2012 at Oconomowoc Memorial Hospital, and at 4:45 p.m., Deb gave birth to Calvin Clark Brezgel. Everything seemed normal, and the nurses took Calvin to get weighed while Dan took their girls to dinner and Deb tried to rest.
The tests took longer than usual, though, and the nurses returned with concerned looks on their faces. They told Deb that Calvin hadn’t opened his eyes, and when they prodded his eyelids open, they discovered he did not have eyeballs.
Calvin’s care has resulted in thousands of dollars in medical bills for Dan and Deb Brezgel. A fundraiser will be held to help defray costs of Calvin’s care Saturday, Nov. 15, Noon to 6 p.m., Breakshots Bar and Grill, 101 S. Main St., Oconomowoc. Donations may also be made at www.caringforcalvin.com.
Calvin was immediately rushed to Children’s Hospital where he endured countless doctors and tests. He spent the first two months of his life in the Neonatal Intensive Care Unit (NICU).
“It was a whirlwind of doctors and nurses,” said Dan. “We were overwhelmed and didn’t know what was happening with the tests.”
No strangers to NICU
This was not the first time they had a child rushed to the NICU. Their middle child, Maddie, 4, was born at 35 weeks and spent a month at Children’s. Maddie is legally blind and continues to have slower development because of her premature birth. Their oldest child, Samantha, 6, was born with severe club feet, requiring special casts and braces on her legs and many doctor visits.
The day after Calvin was born, doctors were in and out to report more bad news to the family. Doctors were unsure how long Calvin would live and they prepared his parents for the worst.
“I call that the worst scenario day,” Deb said. “It was like a line of doctors coming in every five minutes saying he’s not going to walk, he’s not going to talk, he won’t breathe on his own, he won’t eat on his own, he won’t hear on his own, he’s basically going to be a vegetable.”
Two weeks after Calvin’s birth, doctors determined Calvin has a rare genetic defect called SOX2 Anopthalmia Syndrome. While the conditions of the syndrome vary, Calvin has almost the entire spectrum.
Including not having eyes and being 100 percent deaf, Calvin has a very thin corpus callosum (the bridge between the left and right brain), is prone to seizures, has aspiration and needs a feeding tube, has digestive issues and difficulties with bowel movements, and needs testosterone shots and has cognitive development concerns.
According to the Genetics Home Reference website, ghr.nlm.nih.gov, SOX2 anophthalmia syndrome is estimated to affect 1 in 250,000 individuals. However, according to Children’s Hospital, his particular case is one of only 40 worldwide.
In and out of hospital
“He was constantly in and out of the hospital, like clockwork he’d be back again,” said Dan of the first year and a half of his son’s life.
Dan works for the IT department at Kohl’s Department Store in Menomonee Falls, a job that he said is supportive and flexible for the family. But it’s not enough to cover the six figures of hospital bills, medical procedures and testing, medical supplies and nursing care costs the family faces each year.
The Brezgels, who attend St. Catherine of Alexandria Parish, Oconomowoc, and St. Joan of Arc Parish, Nashotah, depend on their good sense of humor and positive attitudes to make it through each day.
“Luckily, we have a sick, twisted sense of humor that it kind of kept us going through some difficult times,” said Dan. “It’s not the end, it’s just the beginning.”
Calvin’s Tree takes root
As another source of support, Deb began advertising an effort called Calvin’s Tree in her church bulletins, asking parishioners to help her out with Calvin and be an extra set of hands.
“I’m not supermom,” said Deb. “I am freely open about that. I can’t fly from here to Children’s whenever I can. I can’t make brownies in three seconds.”
People volunteering with Calvin’s Tree sit with Calvin or hold him to ensure he doesn’t fall out of bed or roll over a cord. That way, Deb is free to cook dinner, do her laundry, or even put her other children on the school bus.
“He’s 24/7 maintenance,” she said. “It’s just the simplest things in life that you can’t do.”
About 20 volunteers per church signed on from their parishes to provide relief for the family. Calvin’s Tree is separate from the fundraiser they started called Caring for Calvin, where individuals can donate and contribute to help the family pay the medical bills.
“It’s not like Caring for Calvin, it’s like Caring for Calvin’s mom,” said Deb, who yearns for a little time for herself to just knit, read or paint.
The family tried to find solace in parent support groups, but what they hoped would bring them answers only discouraged them.
“We tried to understand things, what other people are doing,” said Dan. “We thought it would be a good time to get with other parents to understand what they’re going through and maybe get tips or something. But it was just a lot of negativity.”
Family never questioned God
Deb and Dan ultimately found relief through church,
“It’s come to a point where it’s comfortable at our church,” said Deb. “I have moms that know me, and they help out.”
For Dan and Deb, Calvin has strengthened their faith. They attend Mass every Sunday and they have enrolled their girls in faith formation classes for the first time.
“It opens the door for me to get involved more with the church,” said Deb, “because that’s who is really backing you up when you’re really stressed out and strung out and trying to figure out who’s really there for you.”
The Brezgels admit that they encounter people, who when they see their children, question God.
“They say, ‘Why would he do something to a baby like this? And why don’t you hate him?’” Deb said.
But the Brezgels have always thought their children were gifts from God. They’ve never blamed him or themselves for their difficult life. They are simply thankful for what their children have taught them about life.
“Calvin has brought people to God because he’s happy, he’s laughing, he’s breathing and at the moment he’s not sick,” said Deb. “It’s just opened other people’s eyes that even with a really bad situation, you don’t see us feeling sorry for ourselves. I think it’s brought the community back together; it’s brought people back into the church.”
For the Brezgels, it’s the little moments that matter — moments like putting hearing aids in Calvin’s ears for the first time, and seeing him smile when his mom talked to him.
“Big smile,” said Deb about Calvin when she introduced herself to him for the first time. “So sweet. It was one of those moments that we seldom get with little peanut.”
These and other moments leave Calvin’s parents optimistic. Calvin spent most of last winter in the hospital, but the family is hoping for improvement this year.
“This winter, we hope he’s home more, we just hope for the best.”