Caroline Vetter's Story

On the evening of February 14, 2005 – Valentine’s Day – Caroline had her first seizure. She was just 2 ½ years old. It was a grand-mal seizure that lasted at least 90 minutes. It was such a huge seizure that it left her paralyzed on her left side for weeks. The doctors told us that the seizure was a fluke, that she had probably spiked a high temperature and that it wasn’t likely to happen again. But just a few weeks later, she had another massive seizure. And then a few days after that she had another, and then another. Caroline’s seizures began to snowball out of control. Within just a few months of that initial seizure, she had a seizure so severe that it could not be stopped with any kind of medication. She was flown from Fargo to St. Paul Children’s Hospital by LifeFlight for treatment in their Pediatric Intensive Care Unit and then later their Children’s Epilepsy Unit. This would be the first of many long hospital stays and emergency flights to treat her seizures. As Caroline had more seizures, she developed many different kinds of seizures – from grand-mals, to staring seizures, myoclonic jerks, sub-clinical and complex-partial seizures, and even laughing seizures. As we learned more about seizures, we realized that Caroline had probably been having them since the day she was born.

As the seizures grew worse and more medications, and combinations of medications, were tried to stop the seizures, we started to notice that Caroline began losing skills that she once had had. She began talking less, her mobility lessened, and she stopped growing cognitively. She even stopped eating and drinking. By Christmas of 2005 – less than a year after her first seizure – she had a feeding tube surgically placed, and she was diagnosed with Lennox-Gastaut Syndrome. LGS is a rare, severe type of seizure disorder that is characterized by severe, difficult to control seizures that slowly rob the child of much of their cognitive abilities. This syndrome usually develops in children who have some other kind of brain abnormality. At the time, we thought that it was because of a suspected brain injury that has happened before she was even born. Little did we know at that time that it was so much worse than that.

After Caroline’s LGS diagnosis and several new anti-seizure medications we tried, she went about 6 weeks without a seizure. That would be the last time that Caroline would ever go any length of time without a seizure. Over the next year, the seizures continued relentlessly. No amount of medication would stop them. Her doctors even implanted a type of electronic brain pacemaker called a Vagus Nerve Stimulator in the hopes of slowing the seizures, but they never stopped. Just a year after her LGS diagnosis, Caroline had a bad reaction after a simple tonsillectomy, and she stopped breathing and her heart nearly stopped. Caroline was in a coma and on a ventilator for weeks. She ended up suffering permanent respiratory damage and had a breathing tube (tracheostomy) placed. When she was stable enough to be moved, she was transferred to the Mayo Clinic Children’s Hospital where they rapidly diagnosed the underlying cause of the LGS – leukodystophy, a degenerative neuro-metabolic disease that was causing her brain to literally shrink from the inside out. She was started on a special diet in the hopes of slowing the progression of the disease, and after several months in the hospital, she was sent home with breathing support and full-time home nursing care.

Just a few months later, Caroline started seizing so bad that she was put in a drug-induced coma in the hopes of stopping it. A week later when the doctors tried to bring her out of the coma, the seizures were still there and unstoppable. This time Caroline, just shy of her 5th birthday, was sent home under the care of Hospice. Over the next 7 months, Caroline continued to deteriorate and to have hundreds upon hundreds of seizures every single day and night. She never went more than a few seconds without a seizure. At one point, she was on 10 different anti-seizure medications at once in the hopes of slowing them down. Every anti-seizure medication available to her was tried in vain. She was on many, many more medications to help treat the side effects of the anti-seizure medications and the other effects of the leukodystrophy. She stopped speaking almost completely and lost most of her vision. Eventually after many weeks and months of pain and multi-organ system failure, Caroline Ruby Vetter passed away at the age of 5 ½ on March 26, 2008. She left behind her two older brothers, Andrew and Benjamin, and her little sister, Danielle, and her parents, Tyler and Abigail Vetter.

Caroline was laid to rest next to Jess Beecher. Tyler and Jason Beecher first met as coworkers. Jess and Caroline were only hospitalized together once, and not on the same unit. They always seemed to “take turns” in the hospital – as one came home, the other would be admitted. The two families supported each other throughout their many trials, and Abigail and Amy would become dear friends, and eventually also coworkers.

To get to know Caroline and her vibrant personality, please visit www.caringbridge.org/visit.carolineruby