Autopsy results

I haven't seen or read the autopsy report but the genetic counsellor called Friday to say the results were back. We'd previously agreed that if everything was what we expected then we would just talk it over on the phone, and that's what we did. I'll do a brief summary and when I get my hands on a copy of the report I'll go into more detail. Basically they confirmed HLHS as well as valve atresia. I was a little taken back because although I knew about the valve issue I was under the assumption this was part of the disorder. I guess it just worries me if there was more then 1 defect. I was also surprised to hear that our odds for previous pregnancies are 3-5% for the SAME defect. Again I thought that those were the odds for ALL heart defects not just HLHS. Hearing these odds are scary. I know 5% is great odds and that they could be a lot worse and I really am thankful, but I'm scared. We went into the pregnancy with Hailey not even thinking of defects when really our odds were 1% for some sort of heart defect ( stats show about 1 in 100 babies have a defect, most of which are very minor.) I guess I just look at it as these really were our odds with Hailey and we hit them first try. She also stated that they are starting to lean more toward some sort of genetic disorder with the possibility mixed with environmental. I just hate knowing there's nothing I can do to prevent this from happening a second time.

Now for the really frustrating part.......Her brain was underweight for gestational age. This could mean 2 things. 1- Her brain wasn't getting sufficient oxygen or 2- a typographical error. Apparently in the report the pathologist questions wether the weight as a possible typo. What the hell????? I get how it can happen but how can you not be more careful? We allowed an autopsy to get answers as well as help them understand the disorder better and now we are just left with more questions that can't be answered. I'm really looking forward to reading the report and seeing why it's possibly a typo. If there's a number missing and the brain is severely underweight then yes, most likely just a typo.

This is such a strange experience. I never thought I'd be writing or telling people about my child's autopsy and her brain weight. It just feels so wrong. I miss her so much.