Caroline

My husband and I were elated when we found out we were expecting our first child. I have wanted children for as long as I could remember. I had so many thoughts and visoins about how it might go, what it might be like. I was ill prepared for the ride ahead. At 18 weeks we went for the anatomy screen ultrasound. That was when we found out that something might be wrong. So they told us to come back in 2 weeks and they would look at the brain again- this time they thought they saw ventriculomegally and a missing corpus callosum. We were presented with the option of termination or and MRI for further diagnostics. So we chose the amnio, and MRI. The MRI confirmed that there was complete agenesis of the corpus callosum (CACC). The amnio and other labs were pending at the time, but by the end of the week came back with no evidence of other anomolies or genetic issues. So with a bit of aphrehension and a touch of fear we prayed, relied on God and continued our pregnancy. At 34 weeks, we got another MRI and it showed CACC, and that the right frontal lobe didn’t form correctly, but we were told no evidence of Aicardi Syndrome. Caroline was born on 07/06/11 and was the most beautiful child I had ever seen. The NICU docs, respiratory therpists and pediatricians were all there at her birth, since no one knew what to expect. When they all left and handed her to me it was if the world stood still- that we were the only 3 people in the universe. It was a perfect moment, one I will never forget. Things were going great, she was meeting milestones, gaining weight and seemed to be doing all the usual baby things.
October 6,2011 would change things yet again. This was the day that Caroline started having infantile spasms, practically out of nowhere. So, I called her nerulogist (I had one set up just in case). and we rushed to Hopkins for an EEG. During her EEG she had mulitple spasms for >20min and stopped breathing for a short time. We were admitted to the infant toddler unit where we spent the night. There she got an optho exam and together with the EEG and CACC she was diagnosed with Aicardi Syndrome on Oct 7th. We started zantac and high dose steroids on this day.
October 13, 2011. This was the morning Caroline woke up vomiting blood. I knew immediatly that this was all bad. So we went to the ER as instructed by neuro and pediatrician. There she continued with the GI bleed and had such bad electrolyte imbalances was sent to the PICU. There we spent 4 days and 3 nights attempting to normalize her sodium and bleeding. She was rapidly weaned off of the steroids and started on Topamax. Unfortunatly the topamax wasn’t enough and so we added valproic acid. Despite our best efforts that combo didn’t work either. So after much thought and prayer we started her on Sabril with the topamax.
Since starting the Sabril her spasms have decreased significantly, but aren’t completely gone. However, we seem to have a few days without any spasms and for that we are greatful. We haven’t started the Ketogenic diet but are considering it. We welcome any thoughts.
Caroline, is such a beautiful happy girl. She brings us joy beyond measure and seems genuinely happy. We thank God for the blessing that she is to us and everyone who meets her. Here are some pictures from one month old until now (February)… enjoy 🙂 We can’t wait to meet some of you at the conference!!!