Garrett's Story

For those who weren't aware of Garrett's story to follow along as it unfolded, here's the short version.

Garrett Michael Klein was born Thursday, November 12th at St. Elizabeth's Hospital in Wabasha. He was 7 pounds and 19.5 inches long with good Apgar scores of 9 and 10. The hospital stay, like the pregnancy, was rather uneventful and we went home Saturday afternoon. Early Sunday morning, we brought Garrett to the Wabasha ER with concerns about how fast he was breathing. After the doctor checked him out and had a chest X-ray taken, he said Garrett was fine and we went home. Later in the morning, however, Garrett quit eating and slowly became more lethargic, so we brought him back to the ER again. He was in much worse shape than we realized and was airlifted to Saint Marys' PICU. (Read more about Garrett's first few days and the ER ordeal.)

In the PICU Monday morning, we learned that Garrett had been suffering respiratory distress and congestive heart failure as a result of a vein of Galen malformation -- a condition in which some arteries in the brain flow directly to the vein of Galen without being slowed down by capillaries. This overwhelms the heart, and consequently the lungs and other organs. The condition is very rare and very serious. It affects about 30 people in the US and 400 people worldwide. Although they know that it forms between the 6th and 11th weeks of gestation, the cause is unknown, but research indicates it is not a hereditary condition.

Garrett was scheduled to have some of the arteries embolized that afternoon. In someone as small as Garrett, the surgery is risky and has a high mortality rate. As parents, we could hardly process the news that there was a very real chance we'd lose the little boy we had just welcomed into our lives. But the doctors explained that he would certainly die if the malformation wasn't treated, so we didn't really have an option.

He made it through the surgery, however, and seemed to do even better than the doctors expected over the following days. The surgeons explained that he would need additional embolizations in the future, though. Trying to treat this in a newborn is very difficult, and they could only emoblize a few of the arteries to reduce the excess blood flow. The goal was to wait until he was six months or older before emoblizing more arteries, so he would be bigger and the procedure wouldn't be so risky. In the mean time, he'd be on a variety of medications to help manage the extra strain on his heart.

But, as I said, he was improving well and by Tuesday the 24th, it sounded like we'd be heading home the following day. That same morning, however, some doctors observed Garrett breathing somewhat faster and ordered an echocardiogram to take another look at his heart. They felt it still had too much of a workload and he would need more embolizations the next day. (Eek!)

Our little fighter made it through that procedure as well, and on December 1st, we happily brought Garrett home with dramatically fewer medications. He seemed to be doing wonderfully -- eating well and spending a little more time awake and alert each day.

We expected nothing but good news at his followup appointments December 10th, but while his heart and the malformation itself appeared to be getting smaller (both very good signs), the ventricles of cerebrospinal fluid in his brain were enlarging. With that, Garrett wouldn't be able to wait until he was six months old before undergoing another procedure. He was scheduled for surgery as the first case the next morning, but this time the doctors would use coils to block all the remaining arteries and anticipate that this would be the last treatment needed for the malformation.

Once again, Garrett made it through the procedure like a trooper, but there were complications following the surgery. When the coils clotted over and the excess blood flow had nowhere else to go, some arteries ruptured and the doctors had trouble getting the bleeding under control. Then Garrett's heart began having trouble pumping blood with enough force.

The staff worked continuously to bring Garrett back, but eventually it became clear that his brain had suffered too long without oxygen. By that point, even if they could get his heart pumping sufficiently again, he was essentially already gone. When the time came, we chose to remove the medical aides and hold Garrett once more as we said our final goodbye.