Posted at 1:00 AM
From Anne

Our daughter, Catherine, was born with very long fingers and toes. The doctor's first comment regarded our owning a piano. Another doctor saw Catherine when she was a day old and ordered an echocardiogram for he suspected Marfan Syndrome. Before the echo, he told me what he knew of Marfans - at the time, I knew I had heard of it tho, all I had known was those that had this syndrome were tall - and that it was believed that Abraham Lincoln had it. The doctor's view at this time was VERY bleak. I was given an impression that Catherine would soon be in heart failure. The echocardiogram confirmed an enlarged aortic root, and mitral valve prolapse with regurgitation. Before we left the hospital, we were quite sure that Catherine had Marfan Syndrome. Appointments were made to see a geneticist and pediatric cardiologist with in 3 weeks.

When at home, we were ever watchful of Catherine. We would hover over her crib watching her breathe (thinking, "is her breathing shallow?", "too quick"....). We'd also watch for blue around her mouth and any other signs of heart failure that we were told to watch for. She seemed like our first child instead of our seventh.

After those first few months of watchfulness, we were able to relax and not be so fearful - we were able to take "one day at a time". We learned to appreciate the lives of each of our children more because of Catherine.

An aside - When in the hospital speaking with the doctor that suspected Marfans, he asked if I had heard of it - I responded with "Is that what Lincoln had?" After the doctor left, I thought some about Lincoln wondering if he had a "bad" heart. I then asked myself, "how did Lincoln die?" Being a bit shook up, I honestly couldn't think how he died - I continue with this thought, wondering if it was his heart.... I turned to a friend that was visiting at the time and asked her, "How did Abraham Lincoln die?" She looked at me and hesitated, then said, "I believe he was shot."