Our daughter, Morgan, was born on May 14, 1991. She was a beautiful baby and the joy of our life. Around the age of nine months, she began to have these “episodes”. We couldn’t imagine what was going on. She would always turn her head to the right, her little right hand clenched, and her face was very pale. I called the pediatrician several times and spoke to the nurses, who told me maybe she was having a temper tantrum, maybe she was allergic to her formula, or it’s just something babies do. I just didn’t feel right. I felt something else must be happening to her. At her one year check-up, I told the pediatrician again what was going on. She took me seriously and scheduled an EEG, just to put our minds at rest.
So, on her first birthday, we took our baby for an EEG. Little did we know, it would be the first of many. An appointment was made with the neurologist to discuss the results. During the visit, the doctor asked us what happens when she has the episode. Morgan was sitting in my lap and at that moment, she had one. “Oh!” he said, “that’s a complex partial seizure. I wish I had a camera.” He continued on, saying that there was an abnormality on the EEG. They would need to have a CT scan done. The results of that test showed there was something on her brain. An MRI needed to be done for more clarity. I’ll never forget taking her to the MRI. She had to be sedated, of course, so they gave her a drug that made her fall limp in my arms. She was like a rag doll. I had to walk with her to a trailer where the machine was and since there was no room for me, I had to leave her with the technicians. My husband was at work, so I sat alone, waiting. My mind did somersaults with what ifs. It was finally over and I could take her home. The neurologist told us at the next appointment that there was definitely something going on with her brain. It could have been a stroke, it could have been some tissue that didn’t develop, or it could be a tumor. We were devastated. Did I do something wrong when I was pregnant? How could this be? She’s only a baby. They would need to do surgery to determine what it was.
June 19, 1992 was the worst day of our life. We took Morgan to Scottish Rite Children’s Hospital, which is now Children’s Health Care of Atlanta. We were in the pre-op room and the nurse came to take her to surgery. I had to let her go and give her to the nurse. We didn’t know what to expect or what the outcome would be. We both broke down and the nurses kindly took us to a room where we could be alone. We sobbed for our daughter. What was going to happen now? The surgery took around six hours and during that time, we had a few visitors to keep us from going crazy with worry. My mother was there and her pastor and a few friends. The hospital chaplain came to pray with us and he gave us both a rosary ring. I wasn’t Catholic, but I treasured that touchstone. It was finally over and the surgeon came to speak with us. It was a tumor. He said that it was the size of a golf ball, but it had “fingers” growing out of it. He got as much of the surrounding tissue that he could without damaging her brain. What now? She was taken to recovery and on the way down the hall, they let us see her. Her little head was bandaged in white gauze and she was so tiny on that gurney. The nurse accompanying her handed me a plastic bag. In it was her hair. They had read my mind! They knew it would mean so much to me to have that. It was her first haircut.
She was taken to the ICU and we slept in the waiting room that night with other parents. The next day she was taken to her room. I remember leaving her room to go to the cafeteria and when I returned she was walking around her crib with the nurses around her. She was amazing! I couldn’t believe she was doing so well. On Monday morning, the surgeons came around and told us we could take her home. They sent the tissue off to pathology and we would know soon. She had been in the hospital for 3 days.
We waited for what seemed like forever. Dr. Hudgins, the surgeon, called and told us that her tumor was consistent with gliomatosis cerebri. He did not think that it was that, but the pathologist at Duke said it was. There was nothing they could do. She was too young for radiation and there was no effective chemotherapy. “Love her with the time you have with her”, he said. I didn’t know what to do with myself. I called my husband at work and told him. We were overcome. My mother came over to be with me. We just looked at her and held her. Tears were flowing. That was 20 years ago and I remember everything that happened, like it was yesterday.
Morgan was followed up with countless MRIs and lab tests. No recurrence was ever found and at her 10 year follow up, we were told that she had proved that she did not have gliomatosis cerebri, it was an infiltrating astrocytoma. She is still on anti-seizure meds and she is followed up by a neurologist every 6 months or so. She is tumor free.
Thanks be to God! She has been cured. She never had any radiation or chemotherapy. She does have some learning delays which are being addressed at her college. She is a sophomore studying graphic arts. Again, she is the joy of our life.