I have started this post so many times and then been unable to do it.
We received the final autopsy report for our daughter Ava Grace Johnson months ago. We are quite fortunate that it was completed within 4 months as we were initially told to not expect it for at least 6-12 months. I have also heard stories of families waiting for years for answers and results.
Many people have questioned why we decided to have an autopsy done for our girl. It was a hard decision but one that we both agreed to quickly and wanted to have done even though we knew already knew she had severe cystic hygroma. We wanted to gain any more information we could about why her lymphatic system did not develop, we wanted to know if it could happen again. We just wanted to know SOMETHING!
The thought does not cross your mind when you find out you are pregnant that you are carrying a baby who has vital systems that will never develop as they should. You don't imagine the words "malformation" will be said in the same sentence as the name of your baby. In the back of your mind you know that babies die everyday for reasons unknown and also of horrible things but you really don't think it will happen to you, and when you have already gone through one high risk pregnancy a few years earlier where you are recommended a termination by doctors and told that your baby will likely die, you think that surely nothing like that will happen to you again - because that baby is now 6 years old, asleep in their bed and healthy.
You aren't thinking that the words "syndrome" "nuchal fluid" "cystic hygroma" "incompatible with life" "termination" "fetal death" "chorionic villus sampling" "quality of life" "amniocentesis" "cardiac scan" "trisomy" "aneuploidy" "defect" "stillbirth" "miscarriage" "lymphatic malformation" "life support" "palliative care" "EXIT procedure C-section" "induction" "genetics" will become an everyday part of your vocabulary after you are told these words, read these words, and you live some of these words.
Every single one of these words = a knife to the heart = pain I can't even describe.
How can I be reading the autopsy of my own daughter when I am only 32 years old? How on earth did we hand our daughter over and have the hospital and funeral home organise the transport of our tiny baby from the hospital she was delivered at to the children's hospital - not for treatment that will save her, but for her little body to be poked and prodded and examined.
I have no regrets getting the autopsy as hard as it is to read. It also gives me information that I didn't even know I wanted or would receive at the time like precise measurements of her hands. It talks of her having a "babygram" which I imagine to be a tiny x-ray machine.
The report is 7 pages long. I still don't understand most of it, but its amazing what I do understand with very limited medical knowledge and the help of Dr Google!
Her final diagnosis reads:
Cystic hygroma posteriorly and laterally extending to thoracic wall laterally - vascular malformation with significant lymphatic component.
(a) bilateral pleural effusions
(b) oedema mediastinum and contents
(c) heart structurally normal apart from probable persistent left superior vena cava with dilated coronary sinus.
There were more things that was wrong and demonstrated how sick she was and how much stress her tiny body was under contained in the 7 pages.
Some points that I like knowing is that her little hands were 17mm and her finger length was 6mm. Her perfect foot was 16mm. It also told me how much her precious heart weighed.
Your probably thinking of how morbid this all is, how morbid I am as a person and yes, I probably am. I don't expect you to think it's normal because it's not normal, none of this is normal. Babies should not develop without a vascular and lymphatic system in place. Parent's should not have to sign form's allowing their child to be sent for an autopsy.
I know that Ava was born straight into heaven and that is a big reason why I was ok with her body being examined and tested as it was just her shell of her earthly body. She was already totally healed in heaven before the autopsy even took place. I know people get scared of what their baby will look like after an autopsy - I can tell you it isn't scary. We weren't going to see her again after we left her at the hospital but a few days before she was to be cremated I was desperate to see her again and hold her again so we did. We were advised not to by the funeral home staff and told she would be too fragile to hold - well I just went straight in and picked my little girl up and pulled her into the biggest cuddle I have ever had and she still looked like our Ava, you could not even tell what had happened except that she was a little smaller and the cystic hygroma was now gone so I could see her little neck which was not visible at all when she was born.
I was hoping we would get a "WHY" but we did not despite all of the investigations before and after her death. We will have to live with the "why" question for the rest of our lives now. Why did Ava's body not develop a working and functioning vascular system? why did her lymphatic system not work properly? Why was her pancreas and heart surrounded by fluid? Why was there fluid in her little lungs? Why was she terminally sick?
The WHY question haunts me just as much as the WHAT If...