When Simon Windgassen comes home from the hospital, his older brother Collin runs to greet him with a big hug. Collin then takes a moment to examine the new scar on the side of his brother's head, asking “Does it hurt?” They have the kind of sibling dynamic that you would expect in two young boys, but there is a deeper connection too. Collin and Simon share a diagnosis of congenital hydrocephalus.
Laura and Ryan Windgassen of Elk River, Minnesota, know that hidden between their sons’ arguments over games and toys are moments of kindness, support and genuine camaraderie. “They bond over their condition; they know that they have shunts,” explains Laura. “They think it’s a common thing, and always ask whether everyone else in the world has one.”
Finding a Diagnosis…Twice
Hydrocephalus occurs when too much cerebrospinal fluid builds up in the brain’s ventricles. This buildup can increase pressure inside the head and on the brain, which is the source of painful headaches. Without placement of a flexible plastic tube, called a shunt, to relieve the pressure, hydrocephalus can cause damage to the brain or become life-threatening.
Collin, 7, and Simon, 4, were both diagnosed with hydrocephalus at age 1. Collin received his diagnosis when his pediatrician became concerned about his unusually large head size. Testing at Gillette Children’s Specialty Healthcare later confirmed hydrocephalus, and as Laura explains, “As parents, you don't want to hear anything could ever possibly be wrong with your child. We were definitely in that boat.”
As for Simon, Laura describes him as the “perfect baby.” But at about 6 months old, Simon began crying more than usual. Soon after, he began throwing up as much as five times a day. Simon’s worried parents quickly made an appointment with pediatric neurosurgeon Patrick Graupman, MD. An MRI confirmed he, too, had hydrocephalus and would need surgery to place a shunt.
Surprisingly, Laura felt that learning Simon’s diagnosis was easier than the initial shock that came with Collin’s. “It was so easy to look to Dr. Graupman and say, ‘Go do your thing,’” she says. “We had been down this road, and it was something we had already experienced. We knew that Simon was in good hands with Dr. Graupman. We just completely trust him. He’s one of the most intelligent people we've ever met.”
Same Condition, Different Courses of Treatment
In addition to their shunt placements, Collin and Simon both underwent surgery to address their Chiari malformations at age 3. A Chiari malformation occurs when the back of the brain pushes into the spinal canal, leading to problems with balance and coordination. In Collin’s case, it also affected his swallowing and speech.
Throughout the Windgassens’ experiences at Gillette, they came to appreciate the ease with which they could comfort Collin and Simon. “During the MRI scans, we just loved that we could lay on the bed in the machine with them and hold their hands or rub their feet,” Laura says. “It really helped calm them down.”
Despite Collin and Simon sharing a condition, Simon’s had a few more bumps in the road than his older brother. “Simon has needed six revision surgeries due to complications with his shunt,” Laura recalls. “Each one is as hard as the next because despite being a repeat procedure, it’s still brain surgery.”
After Treatment, a “Striking” Difference
Laura says her family has become prepared to recognize potential problems. “Sometimes Simon’s shunt malfunctions don't show up in an MRI, so my husband and I document all of his symptoms in detail to help track his condition. It's been slow progress for Simon, but I think we're getting into our sweet spot and he's slowly, knock on wood, getting better.”
Laura and Ryan also make sure Simon’s three siblings—including Collin— know what to expect. “Simon's shunt is placed right above his hairline in the front, so every time he has a revision you can see that big scar there,” explains Laura. “We always have to prepare the kids and remind them that it looks like it hurts a lot, but Simon actually feels so much better, he doesn't really notice the scar.”
Laura is quick to mention that Simon deserves credit for helping manage his condition, too. “Whenever he has a headache now, he will come ask us to go and see Dr. Graupman.”
The difference after treatment is striking, explains Laura. “It’s night and day. It’s going from a child who is in obvious pain almost every waking moment, to one who's happy, and able to do things with you. After surgery Simon is back to himself—riding his bike, and climbing things outside just to jump off, which makes Ryan and I look at one another and say, ‘Wow, you feel a lot better!’”
Partners (and Best Friends) in Care
Frequent shunt revisions means Simon has spent a lot more time at Gillette than Collin—a reality that’s bittersweet for the Windgassens. “Especially in the past year, Gillette kind of feels like home,” Laura says. “During Simon’s most recent visit, I stayed with the kids overnight in the Ronald McDonald Family Room so that they could have dinner with their brother. It helps so much to have everyone in one spot for a night.”
Laura and Ryan are grateful Simon can be himself during his hospital stays. “Simon's that kid who wakes up after surgery and is running down the hall with his IV pole, scaring the living daylights out of every nurse on the floor as we try to run after him.”
More than anything, Laura expresses gratitude to Simon’s neurosurgery team for trusting her instincts. “I can call and say, ‘I know something's wrong with my child,’ and they'll get us in that day.”
As for Graupman? “He is one of those doctors who truly care about their patients," shares Laura. “Whenever we come and see him for one of the kids, he asks how the other ones are doing. A lot of Simon's surgeries have ended up on holidays, and Dr. Graupman is always there in the operating room with him—no matter what.”
“Dr. Graupman is my best friend!” adds Simon.
Although Collin and Simon share a diagnosis of hydrocephalus, the commonalities seem to end there. “They actually don't get along that well,” laughs Laura. “Simon's starting to exert his own individuality, and is learning to stand up for himself. Collin, being the oldest, can be bossy and wants everyone to play his way.”
Collin can often be found riding his dirt bike around the neighborhood—one of his favorite activities. Simon can’t help but curiously chase his brother around on his own bike, but his interests are starting to develop independently as well. “Simon loves any type of board game,” Laura shares. “His favorite at the moment is Dinosaur Escape—it’s special to him because his little sister is able to play along.”
The board games and dirt bikes are a positive outlet for the boys as they continue to grow, thrive and enjoy childhood. “I’m always amazed at just how strong and brave they are,” says Laura. “With Collin, I’m so grateful he hasn’t had a shunt malfunction. And with Simon, I know that anytime he does need surgery he’ll be met by the people at Gillette who know and love him. They all remember who Simon is, because he’s feisty!”