After weeks of anxiously waiting for answers, Ellie's autopsy report came in the mail today. While it wasn't at all what I expected, we got some answers. Here is what the report summary said:
Gross Anatomic Diagnoses:
- Female child, without significant trauma
- Status post tracheostomy tube placement
- Status post gastrostomy tube placement
- Benign polyp, tracheostomy site
- Horseshoe kidney
Microscopic Diagnoses:
- Bilateral bronchopneumonia, with scattered granulomas
- Organized pneumonia
- Squamous metaplasia, pulmonary bronchi
- Granulomas, spleen
- Lymphoid hypertrophy, hilar lymph nodes
The immediate cause of death is attributed to bilateral pneumonia. The proximate cause of death is Trisomy 4p leading to developmental delay and aspiration pneumonia.
The report says they found no abnormal fluid in the abdomen and no sign of a perforated bowel. This is pretty hard for me to understand because I was there ... I saw her fluid filled belly, I saw the x-ray that showed free air, I saw all of the clinical signs that pointed almost without a doubt to a perforated bowel. Despite what the report says, I know what I saw, and I will always believe her cause of death to be a perforated bowel.
The report did, however, show that her lungs were in worse shape than we thought. She had multiple chronic lung disease processes going on which are typically seen in long time smokers and lung cancer patients and on top of that had a nasty pneumonia. We knew Ellie's pneumonia hadn't been responding well to treatment, but Ellie was such a fighter and was compensating so well that we had no idea that things were as bad as they actually were. Every time a doctor walked in the room and saw Ellie sitting up, clapping in bed they would comment on how great she looked and how they would never have guessed she was sick. Then they would listen to her lungs and look at her chest x-ray and be shocked at how awful they sounded and looked. She was such a fighter and was so used to working hard to breathe that she made it look effortless and gave us no sign that her body was under as much stress as it was until it couldn't take any more.
The report did, however, show that her lungs were in worse shape than we thought. She had multiple chronic lung disease processes going on which are typically seen in long time smokers and lung cancer patients and on top of that had a nasty pneumonia. We knew Ellie's pneumonia hadn't been responding well to treatment, but Ellie was such a fighter and was compensating so well that we had no idea that things were as bad as they actually were. Every time a doctor walked in the room and saw Ellie sitting up, clapping in bed they would comment on how great she looked and how they would never have guessed she was sick. Then they would listen to her lungs and look at her chest x-ray and be shocked at how awful they sounded and looked. She was such a fighter and was so used to working hard to breathe that she made it look effortless and gave us no sign that her body was under as much stress as it was until it couldn't take any more.
I can't help but feel that if we would have done something different along the way she would still be here with us. I tried so hard to make the right decisions for her. I fought my absolute hardest to get her the best care. But in the end neither I nor the doctors succeeded in knowing what to do for her. We failed her. What's done is done and now all I can do is hope that she knows how much I love her and how hard I tried.
I was able to discuss Ellie's autopsy report with my good friend who works in cardiothoracic surgery and it was helpful for me to hear that all of the disease processes in Ellie's lungs were irreversible and even if we had known about them sooner the only thing we could have done was treat the symptoms and try to slow the progression, but ultimately the only thing that would have saved her would have been a lung transplant which she probably wouldn't have ever qualified for. I hope that these answers will help me move past the what ifs and guilt that continue to haunt me.
As a concluding note: please take care of your lungs! Never take them for granted. To have healthy lungs is such a gift and nothing in the world is worth jeopardizing that. If you or someone you care about smokes, please please please do whatever you have to do to quit. Please don't waste the perfect lungs you were given, because there are children, like Ellie, who spend their entire life struggling to breathe by no fault of their own. That's all.
I was able to discuss Ellie's autopsy report with my good friend who works in cardiothoracic surgery and it was helpful for me to hear that all of the disease processes in Ellie's lungs were irreversible and even if we had known about them sooner the only thing we could have done was treat the symptoms and try to slow the progression, but ultimately the only thing that would have saved her would have been a lung transplant which she probably wouldn't have ever qualified for. I hope that these answers will help me move past the what ifs and guilt that continue to haunt me.
As a concluding note: please take care of your lungs! Never take them for granted. To have healthy lungs is such a gift and nothing in the world is worth jeopardizing that. If you or someone you care about smokes, please please please do whatever you have to do to quit. Please don't waste the perfect lungs you were given, because there are children, like Ellie, who spend their entire life struggling to breathe by no fault of their own. That's all.
