So what happened? I’m sure it’s the question on everyone’s minds. I know it’s all I’ve been able to think about for the last eight months. What the hell happened? I feel like its the first thing people are thinking when they see me but no one has the courage to ask. I’ve thought about writing this post over a hundred times but I’ve held off in hopes that I will have more information to share with you. I’ve spent the last eight months undergoing blood tests and talking to doctors trying to come up with a solid explanation. I had hoped to be able to give you a profound answer that would help us all sleep better at night but, spoiler alert, this post will not bring closure. Below is the long explanation of Ava’s official cause of death and the short answer is, we will never really know what happened. We’ve gotten some answers here and there but we never did find an answer that will bring me the peace I had yearned for. I’m coming to accept that the answer will not come, and sharing the only explanations I’ve gotten is my way of attempting to close this chapter of my journey. I will not find any answers beyond what I provide for you here. I will not hold on to hope that all of my questions will be answered. Instead, I choose to accept what I do know and try to find peace despite the remaining unknown. So for those of you choose to read on, here’s what we do know:

24 hours after we found out I was pregnant I had one episode of bleeding. After that everything was normal until about 24 weeks gestation when by pure luck we found out Ava was tiny. Two weeks later at a follow-up ultrasound Ava still hadn’t grown and suddenly there was no amniotic fluid. So what? What’s the big deal with there being no fluid? As we learned throughout our journey with Ava, amniotic fluid is a crucial component of fetal development. Amniotic fluid not only cushions and protects a baby, but it is the key to fetal lung development. As one doctor put it for us, “no flow, no grow,” meaning no fluid results in no growth and no lung development. We also learned quickly that amniotic fluid is composed of urine and the lack of fluid suggested a problem with Ava’s kidneys. From the moment I was admitted into the hospital, every specialist asked with a puzzled look, there were kidneys on your last ultrasound, right? Yes. She had kidneys on every ultrasound. After three days in the hospital, Ava showed signs of distress that warranted immediate delivery but ultimately, once she was born it was her lungs that failed her and caused her death. When she was born the neonatalogists attempted to breathe for her and even with a tiny tube inserted to help her breathe, her lungs simply would not inflate.

Ava’s death certificate listed three causes of death:

#1 Pulmonary Hypoplasia (meaning immature lungs that cannot function). 

#2 Oligohydramnios (no amniotic fluid)

#3 Extreme prematurity 

The question that remained after she was born was why? Why was there no fluid in utero to help her lungs mature?We never expected an answer. We hadn’t discussed or considered an autopsy but when the doctors asked if we wanted one performed we both immediately said no. The thought of our beautiful daughter being dissected in our quest for answers was too horrific. On the second day after her death, a third doctor asked us for a third time if we would like to consider an autopsy. Once he explained that finding a problem with Ava’s kidneys may have health implications for our one living child we finally consented to a limited autopsy. They were allowed to look at her kidneys and nothing else.

The day I was discharged from the hospital I sat in a wheelchair in my room waiting for Travis to return from packing up the car when one of my doctors came in. She had called in a favor and had just gotten off the phone with the pathologist performing Ava’s autopsy. She wanted to give us some news before we left. We made meaningless small talk for a few moments before Travis returned and she reviewed the findings. The autopsy was not completed and we would have to wait for final reports and pathology but the preliminary reports showed Ava’s intestines were malrotated and her bladder was so small that there was no evidence that she had ever produced any urine. No urine-> no fluid-> no lung development. It appeared that something went wrong with her kidneys’ development and that ultimately led to her death. The doctor speculated that if she had survived past the operating room where she was born she would have died a painful death from kidney failure. We breathed a sigh of relief. I felt the weight of the world lift from my shoulders and for the first time, I felt relieved that my daughter had died. I felt like we had done everything possible for her and it ultimately didn’t matter what we had decided to do, she was always destined to die. I can’t quite explain the relief I felt but for a few days I felt like I had all the answers I needed. I felt a strange sort of peace knowing that my daughter didn’t stand a chance of life outside the womb. I was just so grateful that she didn’t suffer. 

After a few weeks, the relief started to fade. The more I thought about Ava the less satisfaction I felt with the answer that her kidneys just didn’t work. It didn’t make any sense to me. I couldn’t stop asking myself why. Why didn’t her kidneys develop? Why didn’t they produce urine? Why would that just randomly happen? Then the final autopsy results came in. More than three months after she died, when I had already returned to work, I got my answer to her kidneys. 

Everything about Ava that was studied was perfect. She had 23 copies of each chromosome including two X chromosomes that made her my daughter. Her bladder was tiny and her ureters were so narrow it was clear she had never produced urine, but her kidneys, though small and immature, were perfect. From what we can see every single part of her came together exactly as it should. She was 520 grams, one pound one ounce of beautiful perfection. Her placenta was not. 

Put simply, I was told I had the world’s worst placenta. It was full of clots. So much so that there were parts of it that were almost completely obstructed. From what we can deduce Ava never produced urine because she was not receiving nutrition. Her placenta, her lifeline, the physical connection to her mother, was blocked. I remember the times when I would feel hungry and would feel overcome with a sense of panic as I worried that my growling stomach was my baby telling me she was hungry. It felt silly at the time, but maybe it was real. Maybe that feeling of panic was Ava. Maybe she was trying to tell me she was hungry. I can’t stop picturing her starving inside me while I continued to eat. I managed to gain about 25lbs during my pregnancy with Ava and she came out weighing 1lb 1oz. Everything I ate was only serving to over nourish me. And if I didn’t feel guilty enough about my failure to produce a living child now I feel the crushing reality that my body truly failed her. I was supposed to be her mother, to keep her safe inside of me, providing for her, and all the while I cut off her blood supply and nutrition while eating to my heart’s delight. I’m not sure I could feel like more of a failure. The moments I treasure of her moving inside of me are now tainted with the feeling that she was only nudging me to say, feed me, mom! We have no way of knowing when the clots formed but my guess is that it really got bad around 21 weeks, because that’s when her chest stopped growing. Ava was born at 26 weeks and 4 days gestation with a chest circumference of about 21 weeks. That’s about 5 weeks without growth. Those five weeks haunt me. Our biggest fear when Ava was born was that she would suffer, but did she know she was being suffocated and starved for five weeks? Was she hungry? Was she scared? Was my daughter being tortured inside of me while I unknowingly went on with my life, business as usual? Every time I think about it all logic goes out the window. My brain knows she wasn’t consciously aware of what was happening, but my heart and my guilt tell me otherwise. These are my illogical and irrational thoughts and questions that I seem to keep asking and they are usually quieted by the unanswerable, remaining question, why?

Why did my body put a roadblock between me and my child? Why did my body refuse to nurture her? I wish I had an answer. I’ve had blood testing to see if there’s any explanation but it seems none exists. At this point, it appears I am left with no answer beyond stupid, bad luck. Maybe her placenta never attached to my uterus correctly, maybe there was scar tissue from my complications after Logan’s delivery that prevented a good connection, maybe it had something to do with the bleeding I experienced at the start of my pregnancy. The possibilities are endless and the explanations nonexistent. Everyone has reiterated to me that this is in no way my fault, that nothing I did could have caused this to happen and on the surface, I know this is true. However, deep down, in the fleeting moments of my darkest pain, it is hard to convince me otherwise when I am armed with the irrational grief and guilt of a mother who has buried her baby. What if I did kill her? What if I hadn’t gone sledding with Logan the day after I found out I was pregnant, the day I bled? What if I hadn’t gone figure skating and spun in circles when I was 14 weeks pregnant? What if I hadn’t had a prenatal massage? What if I hadn’t sat in the car on a road trip for so long? Or on a plane? What if I hadn’t been so active? What if I had taken better care of myself? What if, what if, what if… I can go on for hours about the possible ways I killed my daughter. I know in my brain that it wasn’t me and I am not to blame, but in my heart, I can’t stop wondering, if I’d been more cautious would we have a daughter now?

So the long story short, there is no answer. My daughter died because her lungs did not develop. Her lungs did not develop because she had no fluid. She had no fluid because she never produced urine. She never produced urine because she was not receiving adequate nutrition. She was not being nourished because her placenta was full of clots. And her placenta was full of clots because…..and here I will remain for all of eternity.