My name is Lee Ann and my husband’s name is Craig, we have a perfect little boy Cael who is 5. We are currently pregnant with our 2nd buddle of joy. I am 5 ½ months along. I was referred out to a specialist in my town because of my age (38), which they say is old now for kids. We went at 18 weeks and had our anatomy scan and gender identification. I wanted so desperately a girl, so when the u/s tech said do you want to know we both said YES! She said it is a girl! Tears streamed down my face, it was a happy moment for me! Then as quickly as the moment came the bad news poured in. The doctor came in and described to us that she had a brain malformation also common with Dandy Walker Syndrome. He said it was a concern as her cisterna magna was 8mm and should have been only 6.9. So he said come back in 4 week and we will recheck when we do your fetal echo. It was the longest 4 weeks of my life, I cried for days!!! I was asked to take the Quad Screen, which I did and passed with no issues, all came back negative. They told us the baby did not have a cleft lip, or any other u/s malformations at that time (nasal bone was present and 2 bends in the pinkie) and we should just watch this brain issue – as at 18 weeks it is not all there.
The 4 weeks had passed and we were confident walking in that we had done our research and this was of medical insignificance because it was an isolated finding. They rescanned the brain and the doctor said we can down grade this to a cyst, which is a variant of DW – all parts of the brain are present and appear to be great. Whew! We were so happy. The joy was short lived, that lasted for about 2 minutes until they then told us the heart had an issue. The doctor asked if I could stick around to see another doctor, I was not understanding him at first, tears streaming down my face, my brain was screaming on the inside, all I saw was anger – how could he keep doing this to us? I said what is wrong now? That is when the news hit me like a chain wrapped around my neck pulling me to a dark place. He said your baby has a condition known as truncus arteriosus, I could not even say it. He asked the u/s tech to write it down for us. I said I could not handle anymore I needed to go home – I was sick with agony. They called us that afternoon to see if we could see a pediatric cardiologist the next day (Wednesday, March 21, 2012). We went the next day and she explained to us what this was, showing us a normal heart and our little Ryleigh’s heart. She then explained what needed to be done, and what we should expect. She said we will have our best University of Florida cardiac pediatricians performing the surgery along with a highley skilled peds team at Wolfson's Childrens Hospital on the case. It has been 5 days now that we were told this news. My mind has not stoppped thinking. I feel guilt, shame, blame, and all of the above. I am working through the emotions and with the support of my wonderful husband we will make it and Ryleigh will too! Afterall she has too, she is my little girl.