Cause of Death

Today marks two months since Weston's death. I cannot believe that I have been without him for two months and that this will not change for the REST OF MY LIFE. If things had turned out differently, I would have been 36 weeks pregnant today: not even full term yet. The crib would be intact and waiting for his arrival, instead of lying around our house in pieces under the bed, in the closet, or propped up against the wall in the guest room that should have been his nursery. The other alternative is that we would probably be starting to plan Weston's homecoming from the NICU within the next month.

Yesterday was my much-anticipated appointment at the hospital with the attending neonatologist at Weston's death. Shannon and I had planned on going together, but he decided not to go at the last minute. It turned out that he was going only to support me, but he was dreading it. Whereas I find comfort in going to the hospital and hearing every last detail, Shannon finds them to be incredibly painful. We talked this out in the car on the way, and he decided at that point not to go; he went to a sports bar and had wings instead. I'm glad it happened this way and that we are able to give each other the space to grieve as we need...at least yesterday.

So, the appointment. K, the nurse family support specialist, met me in the lobby of the hospital so that I wouldn't have to go up to the NICU. Meanwhile, Shannon and I had received a letter from her the other day stating that the NICU Cares program at the hospital will provide emotional support for us for the next YEAR. Seriously, that is amazing.

K took me back to the conference room in the NICU annex, where Dr. Z met us. The NICU annex is on the first floor of the hospital and is where NICU babies go when they are stronger and almost ready to go home. It was hard going in there, because I thought that Weston should almost have been there by now. However, I didn't see any babies, or even any other staff, in there. So maybe it's not in use.

Now that Weston is gone, and no one has to worry about scaring me, I asked Dr. Z for the survival statistics, straight up. So here it is: the survival rate for babies born at 24 weeks is slightly over 60%. In other words, the odds were in his favor, and he lost. That really sucks. However, the odds decrease based on weight and the circumstances of delivery. Survival statistics are worse for babies born out of complicated pregnancies, like Weston was. If I had had a normal pregnancy, been in a car accident at 24 weeks, and delivered then, Weston would have had a better chance of survival. His weight was average for his gestational age.


So, down to the nitty gritty: when Weston was born, my placenta was sent to the pathology department. The conclusion was that there was a possible infection in my placenta (they were not able to confirm it). These infections can make the mother very sick and either start preterm labor that is difficult or impossible to stop or cause fetal distress. I did not go into preterm labor or get sick, although my body was doing weird things that last day of pregnancy. But, there were definitely signs of fetal distress, so Weston had to come out. Sometimes these infections are passed to the baby, and sometimes they don't show up in the baby for quite a while. This might have been the case with Weston, but we will never know because the infection could not be confirmed.

So, my placenta was chronically abrupted, it caused the low amniotic fluid levels, it completely abrupted, and now I find out it might have been infected as well. What a piece of shit placenta. Ultimately, this is what caused Weston's death.


Weston's death certificate states that his death was caused by cardiorespiratory failure, which was caused by pulmonary interstitial emphysema (PIE), which was in turn caused by extreme prematurity. Then it listed another possible contributing factor of "possible sepsis." Although I know what all of the above terms mean independently, I still didn't understand how they worked together. Also, because Weston died so quickly and unexpectedly, I naturally wanted to know more. I had read his discharge report, which gives a pretty good narrative of everything that happened that last night, and I wanted Dr. Z to flesh that out as well.

First, PIE is a lung condition that is not terribly common but not unheard of, especially in babies as small and premature as Weston was. I'm going to butcher this explanation, but here is my best shot: fully developed healthy lungs have passages that branch out, smaller and smaller, until they end in little sacs called alveoli. Air circulates through these passages. With underdeveloped lungs, the alveoli can burst. PIE occurs when gases collect outside of these air passages. It causes lung damage.

Most premature infants have underdeveloped lungs and need mechanical help breathing. There is a wide range of machines that help with breathing. Weston was on a ventilator and later an oscillator, which is the highest form of mechanical help/breathing support; it essentially does all of the breathing for the infant. Other types of breathing help, for healthier and stronger lungs, let the baby breathe on his/her own but provide an extra boost. The ventilator pumps oxygen into the baby's lungs.

Mechanical ventilation literally keeps these babies alive, but the significant downside is that too much use of the ventilator for too long can really scar their lungs. That is why a lot of preemies end up with chronic lung disease. With Weston being so small and, therefore, knowing that he would need to be on a ventilator for a long time, we knew that we would have to contend with significant lung issues at some point.

Dr. Z said that she typically sees PIE in babies who have been on the ventilator for a long time. Weston, however, developed PIE within the first four days of life. This indicated to her that his lungs were significantly more underdeveloped than most, probably even more than most other 24-weekers. He was probably born with lungs more like a 22-weeker (22-weekers who live are in the Guinness Book of World Records; they just don't survive). This is likely due to my oligohydramniosis (low amniotic fluid during pregnancy), which arrested his lung development during his last few weeks in utero.

I have said over and over that Weston's rapid decline and death just came out of nowhere. Now I know I was not the only one who felt that way: K said she was shocked when she found out (other staff has said the same). Dr. Z, who was on the night shift that night, said she was not expecting him to be one of the babies who needed the most attention that night.

Weston's problems started around 3:00 am. According to the discharge report, Weston had a severe and prolonged de-satting episode, and his heart rate dropped down to 88. This is way too low for an infant and was also unusual for Weston. He had never had trouble regulating his heart rate. Dr. Z was worried about a pneumothorax (collapsed lung, which would have been relatively easy to fix), so she ordered an x-ray. No pneumothorax. He still looked relatively healthy and comfortable for the next few hours. But he just gradually declined. Dr. Z thought about other things that could be wrong: malfunction with the ventilator, improperly placed breathing tube, improperly placed central line (which can poke a hole in the heart). But the x-ray showed that the central line was properly placed.

Sepsis is a very dangerous and fast-acting blood infection. Blood drawn a few days prior showed no sign of sepsis for Weston. It takes three days to get a complete reading on a blood culture test, because any bacteria present takes time to grow. As a precaution, though, Weston had been on antibiotics for a few days, which would presumably have killed any bacteria present in his body. In the hours before his death, he was exhibiting symptoms of infection (i.e., a possible inflammatory response), but there was no sign of any infection.

Weston's blood pressure started dropping. Dr. Z ordered dopamine and dobutamine to help with his blood pressure. That occurred around 6:00 am, and that is when Dr. Z called me. She told me again yesterday that, although Weston definitely was not doing well, she did not think it was urgent that we come in. She didn't think he was going to die. But generally, over the course of the last several hours, she had become increasingly concerned that Weston was not improving with or responding to any treatment.

In the next hour, as I pumped at home and got ready to go to the hospital, Weston rapidly declined. It doesn't sound like there was a big moment where he coded and they had to start resuscitation efforts; he just got worse and worse until they found themselves in full-on resuscitation efforts. Dr. Z then mentioned that we needed to be notified immediately and was told that we were already there. That was about 7:00 am.

As I have stated here, we walked in the NICU to find the staff attempting to resuscitate our Weston. It feels like only five minutes passed from the moment we walked in until Weston was placed in my arms to die peacefully, but the report indicates that resuscitation efforts stopped at 7:25 am, meaning that we were actually agonizing over what to do for almost half an hour.

So I am glad to now have the timeline of events pieced together. Dr. Z said that the neonatology department has a roundtable discussion of every mortality, and they had just discussed Weston within the last couple of days. They all came to this conclusion that Dr. Z relayed to me: "We don't know why Weston died." She said (and I believe her) that the department went around and around, wracking their brains as to what happened. Medicine does not have all the answers. An autopsy, which we declined, would not necessarily have given us more information.

Dr. Z has a theory that Weston's adrenal gland, which produces cortisol (the "fight or flight" hormone), was unresponsive and caused his death. She is going to look into whether any other physicians are researching this issue. But this theory is a product of her (and all of the other neonatologists) wracking her brain and not being able to come up with anything else.

This was all very hard to hear. My son is dead, so of course I want to know why. Weston's death will never be OK, and no child's death is explainable, really; while a child's death may be easily attributable to a specific illness or accident, how do you ultimately explain why a parent outlived his/her child?

But, we do not even have a medical explanation. How do we know what needs to be done to prevent other preemie deaths if we can't even define the cause of Weston's death? The best I can come up with is how to avoid a shitty placenta. And no one knows how to do that either.

Once the resuscitation efforts stopped, Weston's last moments were very peaceful. We were given so much compassion that day. This means EVERYTHING to me; I cannot overstate it. This aspect of our experience might be the one I want to take up as Weston's "cause" some day. But things were not handled perfectly (there can always be room for improvement, I suppose.) When Weston was placed in my arms, I thought he was already dead, so I did not really talk to him or sing to him. But, thirty minutes later, he still had a heart beat. And I learned that hearing is one of the last things to go. This has haunted me: had I known he could hear me, I would have talked to him and sung to him. I relayed this to Dr. Z and K. They were so grateful that I shared this and will pass that information along to the next family that needs it. (Because Weston died so suddenly, we had had no discussion of what to expect when he died. Other families whose babies were expected to die did receive a lot more information about it.) This made me happy, in a small way: our experience, Weston's life, will help someone else. Maybe it already has.

Perhaps the hardest question I asked was: did Weston suffer? Mostly, no. Once he went into respiratory distress, he was not in pain. If necessary, pain medication is administered, but not enough to make the baby completely unaware. However, resuscitation efforts can be quite painful. Weston most likely did feel the resuscitation efforts and was in pain at that time. Of course, if the baby can be revived and then survive, the pain is worth it. But Weston clearly was not responding to any of the resuscitation efforts, so it was time to let him go. Continuing resuscitation efforts for an hour or more would have been awful: Weston would have died a disturbing, painful, and scary death on the table and not in my arms. Although I have mostly felt at peace with our decision to let him go so quickly, this was further confirmation that we did what was best for Weston.


In Dr. Z's words, Weston is an "enigma" to the neonatology department. I know what the word means, and that Dr. Z didn't mean anything philosophically profound by her choice of words, but of course I had to look into it further. The word "enigma" has Latin and Greek origins meaning "to speak in riddles" and "fable." Dictionary.com defines enigma as "a puzzling or inexplicable occurrence or situation; a person of puzzling or contradictory character; a person, thing, or situation that is mysterious, puzzling, or ambiguous."

I have always thought of an enigma as being otherworldly and more spiritual than physical. The enigmatic person is surrounded by so much mystery that he ceases to be physical. So, in my head, this is a perfect way to describe Weston. Everything about him is a mystery: how he survived and even thrived inside me with such an inadequate placenta, what he felt and experienced during his life, the medical explanation for his death, when I will get to be with him again, the height and depth of my love for him, and, most of all, WHY. Why was he taken from me?

The medical team tried to treat Weston's symptoms but never discovered the underlying cause. I do not believe that this was a failure on anybody's part. I think Weston would have died no matter where he was. When I told Shannon later, he summed it up as accurately as anyone when he said, "Weston was just ready to go."

I am feeling a lot of anger these days, but never toward Weston. How can I be angry at him for wanting to go be with Jesus? If I can accept Weston's death as Weston's decision, rather than God taking him from me, maybe I can be less angry at God. Easier said than done. But if I put it in writing, maybe it will happen.

So, what is the takeaway point of this post? The cause of Weston's death is one big question mark. Weston is an enigma. A mother's love for her children is an enigma. Both are beautiful and profound, but still enigmas. That is life: one big mystery, one big enigma, one big "puzzling or inexplicable occurrence." I do know that God still loves me, even though I do not want to talk to him very much right now, and that he will be waiting for me when I am ready. I also know that God loves Weston more than I do and that he is taking better care of Weston than I ever could. Although I believe these attributes about God to be true, they are the ultimate enigmas. It is certain that these things will remain enigmas for as long as I live.

Our duty is to remember them so their place in our lives is one of beauty, a beauty beyond this world.  Our duty is to love them boldly, wildly, with every part of our being, and to carry their spirit into the world.
~Dr. Joanne Cacciatore