Precious Little One We had you in our lives such a very short time, but we'll hold you in our hearts forever.
It seemed like only a fleeting moment, but it was long enough to see you, touch you, hold you, LOVE YOU.
It was long enough to know that your life was indeed a gift- no matter how brief no matter how fragile
Your life was indeed a gift, and we'll hold you in our hearts FOREVER.
Our son Carter passed away on 9/17/08 from an extremely rare seizure disorder called Ohtahara Syndrome. Seizures cannot be controlled very well, even with the use of medicine. There is no cure and no research is being done because it is so rare. We were able to have 8 weeks and one day taking care of Carter, memories that I will hold close to my heart forever. This website is dedicated in memory of our precious baby boy who we miss so much and think of constantly.
Carter lived 8 weeks and 1 day. He was born July 22, 2008. I had a fairly normal delivery. Carter and I spent 3 nights in the hospital because he wasn't eating very well, something that we thought was a newborn thing at the time. We were able to bring Carter home and we spent the next 35 days at home with him. At about 5 weeks, we noticed Carter had a small twitch in his eye. We didn't think much of it until a few days later when his arm started to shake a little bit along with the twitch. I brought Carter into his doctor that afternoon for a weight check, because he still was not eating very good and was slowly gaining weight. I mentioned the twitch to the doctor, and Carter actually began to do it. The doctor was very concerned and felt that Carter could be having small seizures. We were rushed down to St. Mary's hospital in Madison. We spent a total of 13 days there. Every test was done on Carter- all normal. However, his EEG showed an abnormal brain wave pattern called burst/suppression. Basically, we were told that Carter's brain wasn't sending out the signals that it needed to. His brain wasn't sending the signal for him to breathe normally on his own either. This caused Carter to become very sick. He was put on a ventilator to assist him in his breathing. The neurologist diagnosed him with Ohtahara Syndrome. This is extremely, extremely rare. My husband and I wanted a second opinion, and to know that we did all we could for our baby. We transferred over to Children's Hospital in Milwaukee where we spent the next 6 days. We were given the same diagnosis. Carter's seizures seemed to get worse every day, even with the use of medicine. We did not want our baby to be on a ventilator for the rest of his life- that is not living. We knew deep down that we would be selfish to keep him here suffering, when he could go to heaven and be a perfect angel. We are devasted and we do not understand God's plan in all of this. We believe there is one, and we also believe we probably will never know why this happened. It is very hard for us to admit that. We do know that Carter touched so many others. He was a little fighter; he went through so much suffering, and we as parents had to witness all of it. It breaks my heart that there was nothing we could do. Carter left behind many here who are very sad, but he is in the best place imagineable. We miss our little guy so much that I can't put it into words. We hope that through Carter's story and this webpage, that he is able to touch even more lives and spread more love to others.
Honoring Carter's Life
No research is currently being done on Ohtahara Syndrome. There is so little known about it and there is such a wide range of possible causes. In Carter's case, there was no known cause. There are too few children for anyone to be interested in doing research. Carter's life mattered. The least I can do to honor my child is raise awareness of Ohtahara Syndrome.
Carter touched so many people in his short life. Just because he's gone, his memory and inspiration doesn't need to end.