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Tuesday, 26 May 2015

Autopsy Preliminary Report

We met with the geneticist and genetic counsellor today to go through the preliminary autopsy report. We knew Ava had cystic hygroma from all the ultrasounds and when she was born it was obvious. 
The report stated how extensive it was. It also went on to say that she had fluid developing inside her body too, around her heart and lungs. As well as not being able to breathe because her airway would have been affected, she also would never have been able to breathe because of her lung development - they weren't going to develop as they should have because of the fluid build up inside. This fluid was a sign that she also had the early stages of hydrops. This is a serious condition that is also known to be incompatible with life in most instances. Hydrops is common in babies with extensive cystic hygroma. Her tiny heart would have been working so hard because of this fluid. My heart just broke some more - cystic hygroma is  bad enough on its own, but to know she had hydrops developing too - she never had a chance even if she did survive the pregnancy which is very unlikely given the odds. If her heart hadn't stopped and she did make it to term and was born we would have had to make the decision whether to put her on a ventilator - which isn't a long term option. Ava was always going to die. She also had something wrong with her heart too - which is separate to what the fluid was doing to her heart too as it built up surrounding her heart and chest region. 

Also was told some other shattering stuff but too painful to share that with everyone today. 

I feel like I'm right back in the same place we were almost 10 weeks ago. 

We had a daughter, her name was Ava Grace. She died because she had extensive cystic hygroma and hydrops. This meant the heart fails because you need your lymphatic and circulatory system to work properly to pump fluid and blood around your body. She was a fighter, we saw how active she was on ultrasound and how good her growth was despite her little body working so hard on the inside. 

Today was an awful day. 

1 comment:

  1. Oh Erin. How dreadful. I'm so sorry you're feeling the way you are today but good on you for finding out and not shying away from it. Thank you for sharing. Sending all the love in the world.


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