Katherine's Journal

I am the mother of a 5 1/2 year old son. I was 42 when I discovered my pregnancy and was taking several medications not conducive to a healthy pregnancy. I had not one, but two fetal heart scans, which showed a normal heart, the last one in my 6 1/2 month of pregnancy. I had all the genetic testing done, as well as my husband. Everything came back normal. My son was induced at 37 weeks, then declared slightly earlier than that - and was in the NICU for 5 1/2 weeks, due to his inability to nurse. His heart, among many other things, was checked out. The eventual diagnosis was 'lack of suck, swallow, breathe reflex' due to prematurity. All this occurred at Riley Hospital for Children in Indianapolis. At his 8 week check up, I took him to his pediatrician for the first time. She said he had a heart murmur. Given his previous extensive testing, she declared the murmur a PFO (Patent Foramen Ovale) and said it would most likely close by age two. Other than asthma, my son has been very healthy. He has mostly outgrown the asthma, as well. Over the years, trips to the clinic (where he doesn't see his regular pediatrician) for fevers, sore throats, rashes and the like - never a mention of the heart murmur. At around age two - I began ASKING the attending pediatricians (this at IU health) about the heart murmur. Most could not/did not hear a murmur. The murmur did not go away, and I finally got my son in to see a cardiologist. The diagnosis is Bicuspid and Domed Aorta with some regurgitation. We go to see another specialist next week for additional testing and 'measurements'. I am devastated. I am also confused. How did a birth defect that develops in early pregnancy get missed on TWO fetal scans at a top children's hospital? How did this get missed for 5 1/2 weeks in a NICU at a top research hospital? I have no confidence in the health care my son is receiving now, and it is supposedly the best in my state. Also, if additional treatment is necessary, how do I explain this to a 5 year old without terrifying him?