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Isaiah’s rare condition leads to innovative solution from M Health care team

Vein of Galen malformation can cause many other health problems, such as heart failure, bleeding and seizures.
The Grossmann family — Kate and Brad; standing in front from left, Lilianna, Josiah, Isaiah, and Theodore. Isaiah was diagnosed with vein of Galen malformation, and has undergone several surgical procedures at University of Minnesota Masonic Children's Hospital.

Isaiah Grossmann is a happy, goofy kid who loves to make people—especially his three siblings—laugh. Given what he’s been through in the 20 months of his life, that’s pretty amazing.

The son of Brad and Kate Grossmann of Hugo, Minn., Isaiah was born with what’s known as a vein of Galen malformation. According to Interventional Neuroradiologist Bharathi Jagadeesan, MD, who helped with Isaiah’s case, the rare malformation occurs when the venous system connecting the two hemispheres of the brain does not mature properly.

“It results in numerous abnormal channels between the arteries and veins of the deep part of the brain,” said Jagadeesan. “That leads to a short circuit in the way the blood flows through the brain and returns to the heart, which can cause many problems, such as heart failure, bleeding and seizures.”

The malformation was discovered during a regular checkup when Kate was 32 weeks pregnant. Despite the diagnosis, Kate and Brad’s faith was a source of strength for the family.

“Whenever you hear something about your kids, your mind starts going to the worst case scenario,” said Brad Grossman. “At times like this, we remember God’s character, that’s he’s good and in control.”

A Creative Approach
When Isaiah was finally born, he seemed perfectly healthy, passing tests with flying colors. Children like Isaiah who have a vein of Galen malformation but are born with relatively few symptoms have a much higher chance of having a good outcomes from surgery, Jagadeesan said.

After Isaiah and Kate were discharged following his birth, various members of the Grossmann family would troop twice a week to Isaiah’s required check-ups. He was run through a regimen of cardiology, neurology and growth and development checkpoints, which would help determine when he would receive surgery.

At five months, the circulatory system in Isaiah’s brain had matured enough for the first operation. While his brain may have been ready, the femoral artery in his groin—the typical gateway to the blood system in the brain—wasn’t.

It was time to get creative. Isaiah’s care team at the University of Minnesota Children’s Masonic Hospital included Jagadeesan; Neurosurgeons Andrew Grande, MD, and Ramu Tummala, MD; former University of Minnesota Masonic Children’s Hospital Pediatric Cardiologist Daniel Gruenstein, MD; and Pediatric Radiologist David Nascene, MD.

Together, the group took an innovative route to Isaiah’s brain. They sent a catheter through Isaiah’s femoral vein, then used a hole in Isaiah’s heart—known as the foraman ovale—to enter his arterial system. From there, the team routed the catheter into Isaiah’s brain. In the brain, they blocked blood flow to the tangled, malformed knot of blood vessels. Blood would then begin to reroute in a more normal fashion.

Innate Resilience
Isaiah would go on to have two more surgeries to block malformed blood vessels in his brain. During that time, he would suffer a small stroke and a brain hemorrhage that required draining. After one of his surgeries, it took Isaiah longer than usual to wake up. Brad quoted part of Psalm 139:14 of the Bible to describe his son’s resilient reaction to each setback: “We are fearfully and wonderfully made.”

Isaiah will continue to need that innate resilience—the 20-month-old will eventually undergo open heart surgery as well.

While Kate and Brad are very grateful for the entire care team that worked with Isaiah, they are particularly thankful for Jagadeesan, or “Dr. J” as they affectionately call him.

“With all the different professionals you see and all the nurses you talk to, it was nice to have someone who was the same through it all—a face that we knew,” said Brad. “We really trusted him and appreciated how available he was to us.”

“We couldn’t have treated [Isaiah] without having all these specialists willing to work together,” Jagadeesan said. “That’s why treating kids with complex disorders at University of Minnesota Masonic Children’s Hospital makes such a difference. Leadership has done a good job of bringing teams together and it shows in the results we’ve been able to achieve.”

As Isaiah continues to recover from his numerous surgeries and faces yet another uphill climb, his sense of humor will continue to make his family laugh. That is, after all, the best medicine.