Gwendolynn Claire Howard came into the world on July 30, 2003 at 12:10pm. I had a very uneventful pregnancy except for a lot of dizziness and some unexplained shaking in my belly, which I later realized were seizures, and right away I noticed that she looked physically different. Her right ear was a little bent, and her left eye was smaller than the right. When I questioned the nurses and the on call pediatrician, I was assured that she was fine. I really wanted to believe them, but my husband always knew something wasn’t right. He would lay in bed at night looking at her and ask me, “What is wrong with her?” No one could have ever prepared us for the journey we were in for.
When I took Gwen to her 2 week well baby check, I was still concerned about her eyes, they didn’t seem to focus, and she still kept her left eye closed most of the time. Her pediatrician referred us to an optometrist. When we went to see the optometrist he did a very short eye exam and told me that her eyes were just fine and that she was just a little farsighted. I assumed he was right and went on with my daily life. Gwen seemed to be developing on track, and the doctors told me she was fine, so I had no reason to believe otherwise.
Gwen was 7 weeks old when I saw her first grand mal seizure. I remember it like it was yesterday. She was nursing, and just as she was about to fall asleep, she started twitching, at first I thought it was nothing, but then she went on to do it 3 more times. I called my husband and told him something was wrong, and then I called the pediatrician, who told me to come in right away.
Gwen had another seizure while the Dr. was examining her, so he called the closest pediatric neurologist and sent us down to see him. We drove an hour and a half down to Pensacola that day, and had an EEG. The EEG came back abnormal and she was immediately admitted to the hospital to try to find the cause of her seizures. She was there for three days, and they were the worst three days of my life. While there, they did drug tests, tested her for meningitis, and finally did an MRI.
When the doctors gave us her MRI results my entire world stopped. We were told she had severe brain damage, porencephaly, agnesis of the corpus collosum, and her optic nerve looked like it had problems as well, but we needed to see an opthamologist for an exam.I kept asking the doctor for a prognosis, but no one could really give me one. Some would tell me that she could still go on and live a relatively normal life, and others would say that we would be lucky if she could walk or talk. I felt like my heart had been completely ripped out. It was absolutely horrible.
Unfortunately, the bad times weren’t over yet, we still had to see the opthamologist. I took Gwen by myself because my husband had to work. I remember thinking to myself, “God, please don’t let her be blind,” I had barely finished grieving over the first diagnosis, and all I could think was that if she couldn’t enjoy life fully, she should at least be able to see the beauty of the world. But alas, the opthamologist diagnosed her as legally blind. She has optic nerve and retinal colobomas, and severe nystagmus.
A few days before Gwen was three months old, she started having infantile spasms. At that point, she was put on ACTH, an absolutely horrible drug, that made her incredibly irritable. The ACTH was able to keep the spasms away, but only until we weaned her, and then they would always come back. Over the course of the next year, she had 3 more rounds of ACTH, and we always had the same result, the infantile spasms would subside until she weaned and then they would come back. During that time, we also experimented with several different medications, she was on Topamax, Tegratol, and Zonegran as well as a steady dosage of phenobarbital. We finally found that the combination phenobarbital and Lamictal kept the infantile spasms down to only one or 2 clusters per day.
This year has really been a turning point for us. We moved from Alabama to Florida in March, and Gwen was finally diagnosed with Aicardi Syndrome, until then, the doctors only gave us a cluster of symptoms, and when I asked them about Aicardi, they would always tell me it was too rare for it to be a possibilty. She has also finally been weaned form the phenobarbital and is taking Clonopin and Lamictal and seems to be doing fairly well, although she still has at least one to two clusters of infantile spasms daily. Taking her off the phenobarb has really brought back some of her personality too, and I am so glad to see it still there.
For a 2 year old, Gwen is very developmentally delayed, but I try to remember that even the smallest achievement is a huge thing for her. She receives OT and PT once a week, and has a vision teacher that comes out weekly as well. She can now sit on her own very well, and can eat most table foods. She reaches for toys put in front of her, and although she is nonverbal, she lets you know what she wants. She also really enjoys being talked to and sung to. She has even started giving me kisses. Which I love, of course!
Gwen touches the lives of every person that she meets, she is an absolute joy to be around, and is always happy as long as she has someone to interact with. I truly believe that she was put on this earth to teach others how to be better people. She has already taught me so many incredible things, and I can only imagine what more the future has to hold. She is a true blessing.