By Shannon Healy
Our sweet baby boy, Jack, was born Oct. 18, 2012. When he was only a few weeks old, we started noticing he was having “episodes.” His body would tense up and he would scream like he was in pain. These continued to worsen as he got older and got to the point where he would wake up with them every time he tried to go to sleep. He also began having episodes where he would appear to be laughing but still looked terrified and in pain.
For months, we sought out different specialists to try to diagnose our baby’s episodes. Finally, in April 2013, we were referred to the neuroscience program inside the St. Paul campus of Children’s Hospitals and Clinics of Minnesota. Still unsure of what his episodes were, the staff began following him closely and keeping a close eye on his other symptoms (a large head and low muscle tone).
In August 2013, Jack had an MRI on his brain. Within days, we had a diagnosis: Jack had a tumor on his hypothalamus and his “episodes” were gelastic and dacrystic seizures associated with the tumor. This time was so overwhelming for us, but we finally knew what Jack was battling.
Jack was prescribed a few different seizure medications, but his seizures continued to worsen. At the peak, he was having up to 15 seizures per day; more severe and longer in duration than when he first started having them. They were taking a toll on Jack and our family. He has two older sisters who adore him, and they would get extremely upset every time he would have one of his “fits,” as they called them.
It seemed like the seizures were affecting every aspect of Jack’s life and development. He began refusing all solid foods and would take only bottles of milk. His seizures constantly would interrupt his sleep. He was having severe delays in his gross motor development and also was falling behind in his speech. Defeat and hopelessness were setting in for us.
After watching the tumor for three months, the neurology team at Children’s was able to confirm that Jack had a rare, benign tumor called a hypothalamic hamartoma. We were told that these tumors occur in only one in 1 million people, often appearing in young children. According to Meysam Kebriaei, MD, Children’s neurosurgeon, that number could be underestimated since hypothalamic hamartomas can be missed without high-resolution MRIs.
In December, we met with Dr. Kebriaei, who discussed a new surgical procedure called Visualase, an MRI-guided, minimally invasive laser procedure. He thought Jack would be a great candidate.
Jack would be the first patient at Children’s with a hypothalamic hamartoma to undergo a Visualase procedure. We were thrilled to have this option available to us and made our decision to proceed before we left the clinic that day.
We also learned that Children’s is the only institution in the Midwest to perform Visualase ablation for hypothalamic hamartomas. Dr. Kebriaei explained that Visualase would allow him to treat Jack’s tumor in such a way that will minimize the risk and decrease his recovery time, when compared to the standard, open surgical procedure.
Jack’s surgery was scheduled for Jan. 10. He had seven seizures the morning of his surgery; a strange reassurance to us that we had made the right decision. The surgery took the entire day and we were updated by Children’s staff throughout the process. We never left the waiting room.
At the end of the day, Dr. Kebriaei told us that the surgery had gone perfectly. The tumor had been completely disconnected from Jack’s brain. We spent two nights in Children’s ICU with Jack and, amazingly, he was seizure-free.
After going home, Jack experienced an unexpected drop in his sodium level, which required a readmission to Children’s. He spent 2½ weeks in the hospital, where he continued to receive extraordinary care and, in spite of this complication, continued to be free of his debilitating seizures.
It has been almost four months since Jack’s surgery, and he has not had any seizures. It still is hard to believe, considering he had these seizures daily for 15 months. Sometimes, I still expect him to be having one when he starts laughing, but then I realize that he is laughing because he’s so happy!
With the seizures gone, we now are able to focus on Jack’s development. He is having therapy multiple times each week, and we already are seeing progress in his eating, speech, motor skills and sleep patterns. Just within the past week, Jack has been standing, walking and pushing toys through our kitchen. We are hopeful these parts of Jack’s life only will continue to improve.
This surgery has been life changing for us. We learned later that Jack is one of only 50 people in the country who have undergone Visualase ablation for a hypothalamic hamartoma. After months of feeling grief and hopelessness, we have a renewed hope that our sweet boy is going to have a healthy and happy life. As Dr. Kebriaei told us at Jack’s last appointment, “He’s about ready to take off.”
The neuroscience program at Children’s Hospitals and Clinics of Minnesota unites hundreds of experts in a common mission. We care for more neurology patients, more brain tumor patients and more epilepsy patients than any other hospital in the region. And we do it with some of the most advanced treatments and technologies available today.