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The Report

I finally received the autopsy/coroner’s report in the mail.

The results were not what I expected. The results were not what I understood happened after speaking to the Coroner three weeks ago.

Cause of death: acute postnatal respiratory failure

Due to or as a consequence of: meconium aspiration, persistent pulmonary hypertension and pulmonary hemorrhage

Due to or as a consequence of: acute intrauterine hypoxic-ischemic injury

Due to or as a consequence of: cause unascertained

We had been under the notion that Autumn had a lung development issue that caused the respiratory failure. Instead, evidence shows, and the report clearly states, that she was deprived of oxygen in utero, and this caused everything that eventually led to the respiratory failure.

“This raises consideration that the infant’s postnatal course mainly was a consequence of an intrauterine hypoxic-ischemic event with central nervous system injury rather than due to a primary pulmonary pathology. The meconium discharge, thymic cortical histiocytosis, pulmonary hemorrhage and rapid development of postnatal marked lactic acidosis could all relate to an acute intrauterine hypoxic-ischemic injury.”

I’m left with so many more questions, which I was expecting. But I didn’t expect to find out that it was my placenta, my body, that caused her death. That’s what it really boils down to…it was not a congenital lung defect, but rather an injury to my otherwise perfect little girl that caused this.

How unfair this all is.

2

Bad Blogger!

Things have been quite busy the past few weeks. I’m back at work now and trying to get re-acclimated to working full-time. I’m happy to be back, but that’s only because I have hope once again…

This month I was trying to avoid stressing about getting pregnant, which is really really hard for me. So I would be less likely to obsess over every little thing I asked Alden to write my basal body temperatures down once I confirmed ovulation. I would take my temp then pass it to him, he’d write it down on a piece of paper and stick it on the fridge. This helped me focus on other things, and I think he enjoyed being part of the process.

Last week at 10dpo though I cheated and looked at the temperatures. Then I cheated more and put them in Fertility Friend chart and saw that my temperatures were much higher than normal starting from 5dpo.

At 12dpo I cheated again and looked at my temperature before passing the thermometer to Alden. It had jumped up again, so of course this was all I could think about all day. On my lunch break I decided to run to the dollar store to grab a test, completely expecting it to negative.

But before I had even left the stall there was a line coming up. I couldn’t believe it because the only symptoms I was having of being pregnant was the higher than normal temperatures. I called Alden to let him know, then I called my mom, and my dad, and my best friend, and my aunt, and my grandparents, and even my hairdresser (she’s psychic and told me I would get pregnant quickly). I basically got zero work done from that point on.

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Really crappy picture taken after 1 minute on a dollar store test. My hand was shaking I was so shocked.

Then I started having second thoughts because what if the test was wrong and I jumped the gun? So when I got home that night I took my last dollar store test and my last First Response Early Result (FRER), and sure enough, both were super positive. The FRER line was almost jumping off the test.

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Super positive FRER at 12dpo

So that’s where I’m at. It took us 3 cycles, 4 months after losing Autumn, and Robitussin to get that positive. I am happy and hopeful, and feeling really bittersweet that Autumn is not here. Although I’m ecstatic about this pregnancy, I’m also really missing her since finding out.

 

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The Statistics of It

I have been thinking a lot about statistics now that I know what happened to Autumn.

When I found out I was pregnant I spent the entire first trimester focusing on the chance of miscarriage. Every week was a win as the chances went down. When we got to 12 weeks I was relieved, thinking that we had passed the scary part and were well on our way to having a live baby.

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By week 24 I was counting the chance of viability. Every day that her chances of surviving outside the womb increased was a huge relief. When we got to 30 weeks I was ecstatic. 34 weeks was even better because I knew we were out of the woods.

I didn’t really consider relevant the 0.1% statistic we find ourselves part of now, because the chances were so slim. What’s 0.1%? That’s nothing.

Except, it turns out it was everything.

We survived the 30% chance of miscarriage in the first trimester and the 83% mortality rate for premature babies at 23 weeks, yet were felled by the 0.1% chance that our child would be born live and die from pulmonary hypertension and pulmonary hemorrhage. If this wasn’t my life I wouldn’t believe it.

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DNA

I have not admitted this to anyone, and I don’t even think Alden has noticed, but when I’m having a particularly bad day I will pull out the blanket that Autumn was wrapped in and sleep with it.

There are a few spots of blood on it from her UVC, and I make sure that side of the blanket is turned in so they don’t rub off. Along with a few bits of her hair, those spots of blood are the only DNA evidence that she was ever here on this earth, and they are precious.

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Closure

I feel like we have some closure. We finally heard from the coroner, who explained as best as he could what happened with Autumn.

The summary of the last few days after speaking to the coroner, my midwife, my GP, and the NICU paediatrician (I’ve been busy):

  • Her lungs did not develop properly. There is no name or diagnosis for what happened, or why, but this was the root cause of her death.
  • It was a snowball effect: the lung issue was the catalyst for the pulmonary hypertension and hemorrhage, which led to cardiac arrest and brain death.
  • There is likely nothing that could have been done, and certainly not without knowing in advance that there was an issue.
  • There was no found genetic link so we are not more likely than any other couple to experience the same thing again.
  • The hospital and SickKids did everything in their power to save her, and everyone was baffled at how all of their interventions failed.
  • This has impacted everyone greatly, including the NICU paediatrician who has had nightmares about that night. Autumn will not soon be forgotten by anyone who was involved.

I didn’t expect the final result to be so healing. For the first time last night I was able to go into Autumn’s room and spend time in there, looking through all of the clothes that had been hung up and put away. The day after her death we moved all of the baby things around the house into her room because it was too painful to look at it – now I’m ready to remove all the items that don’t belong in her room (the stroller, the playpen, the exersaucer) and put her room back the way it was when we left for the hospital. I know she’s not coming back, but it feels right to at least do that for now.

Also, I am not pregnant. BUT I am thinking positively and expecting this to be the month. I am going to channel my inner Oprah and visualize a positive pregnancy test until I get one. And also I’m doing what I can to help things along: the usual tracking and timing and ensuring the best possible conception environment. I’ve even started doing yoga daily to help alleviate stress (I avoid exercise like the plague usually).

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Complete Clusterfuck

I wanted to share my experience at the hospital where I gave birth to Autumn. There were a number of things that were disturbing, especially after everything that happened with her death. We do intend to formally write to the hospital and the Ministry of Health with our complaints, but we are waiting for the autopsy report to come in first…just in case there is a cause to suspect negligence. In that case, obviously, we would be pursuing a different course of action.

The first thing was a rather small detail. My midwife wasn’t able to find a pillow for my bed on the L&D floor. She had to improvise by stuffing a few bed sheets into a pillowcase to Macgyver a pillow for me. I don’t know whether this is a common occurrence at hospitals….but not something I was really pleased with because it really wasn’t that comfortable.

The second thing was definitely a big thing for me. The hospital I chose was not the closest to us. In fact, it was pretty out of the way, but I chose it because of the option to have a water birth. The jacuzzis were located in private rooms across the hall from the birthing suites (at the time of the delivery the L&D floor was undergoing renovations to move the tubs into the birthing suites). My plan was to use the tub for pain management for as long as possible instead of going straight for an epidural. When my midwife went to prepare the tub she found that it hadn’t been cleaned from it’s prior use. She had to request the tub be cleaned, which was done by the hospital, but then she realized that there was no hot water. So using the tub was out completely, which was the whole reason I chose that hospital.

Things get a little hazy here because of the shock of actually delivering Autumn and the subsequent events. My midwife called the on-call paediatrician and two NICU nurses into the birthing suite just before delivery because of the presence of meconium in the amniotic fluid (this is common protocol when they see meconium). We overheard some discussion among them that the machine attached to the wall above the warmer may not have been working properly. Basically they had had issues with that machine in the past. Once Autumn was on the warmer they brought in a mobile machine to measure her blood oxygen levels, however I definitely heard them say again that they weren’t sure that machine was working. It was at that point that they decided to take Autumn to the NICU for further assessment.

Once I was in the NICU with Alden and Autumn, which was about an hour after her birth, I witnessed complete chaos while the hospital staff worked on her. They couldn’t find things that they needed, nobody was taking notes, and everything just seemed very disorganized. I realize that they were dealing with an emergency and some chaos is probably pretty normal, but there was a definite difference between the hospital staff and the SickKids staff (once SickKids arrived). When the SickKids Team took over Autumn’s care there was a complete change in the room’s atmosphere. I actually felt a sense of relief watching them work, calmly and professionally. We could also sense that there was some frustration on the part of SickKids towards the hospital staff. We observed the hospital staff being asked by the SickKids Team who was responsible for recording notes, and watched as the hospital staff scrambled to find paper and pen to start recording.  The hospital staff could not confirm how much she weighed and had difficulty accurately relaying what efforts had already been made to stabilize Autumn. We observed one paediatric nurse in particular who appeared defensive when asked by the SickKids team what had been done prior to their arrival.  We also witnessed one of the nurses spill blood on the floor and chair as she was scrambling to provide plasma for the SickKids team, and they could not find a specific item that SickKids had requested and were scrambling and searching through drawers and cupboards to no avail.

Out of everything that happened that night, watching the apparent inexperience of the hospital staff managing my daughter’s condition was one of the most traumatizing. I re-lived those moments over and over again for months. It kept me up at night and I wonder whether I suffer from a form of PTSD as a result.

To clarify, the hospital is supposed to be a level II nursery, with the resources and knowledge to manage relatively sick infants, located in a major metropolitan city in a first world country.

The whole incident with Autumn in the NICU took place in front of all the other parents who had infants in the nursery. From her crashing on the table to them telling us that she was not going to make it, all the other parents were witness to it. Not only did it not allow for us to have privacy during the worst moment of our lives, but I can only imagine how those other parents felt being witness to the death of another infant while their own child is sick enough to be in the NICU.

Instead of having the opportunity to bring Autumn back to our private room to say goodbye, we were led into what is essentially a storage closet with a table and chairs to say our goodbye. Rather than allowing us that quiet time to say goodbye, the paediatrician came in to give her condolences but also to gather information about any family history that could have contributed to Autumn’s death. This happened while I was holding my daughter in the final few minutes of her life, and it robbed me of that precious time with her.

Finally, someone took pictures of Autumn for us after we left. There seemed to be no effort made to make the pictures something we would actually want to look at. The tubes were still attached to her, and to be honest, she looks deader than dead. Those images are traumatizing and I’ve since given them to my father to hold because I don’t want Alden to see them. I don’t understand why they couldn’t have made some effort to clean her up, or called a service like Now I Lay Me Down To Sleep.

The final nail in the coffin that something needs to change happened about six weeks after her death when I got a letter in the mail from the Ontario Government reminding me that I hadn’t registered the birth of my newborn. Apparently there is no procedure in place to notify the appropriate institutions that a death has occurred to save the parents the trauma of having to record their dead infant’s birth with the government. I can’t describe how hard it was to answer all the questions about her birth, and I should never have had to do that. No loss parent should have to do that.

If there is anything good that comes from Autumn’s death it will be that I will fight to make changes happen, with the hospital in particular, so that no other parent has to experience such a clusterfuck.

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It’s Not Over Until The Fat Lady Sings

Or something equally as clever for the subject matter.

After being sure that I was out this month, and being devastated because of it, I’ve had quite a few perplexing days. My body has certainly kept me guessing.

Since the spotting and cramping 10dpo and 11dpo I had nothing yesterday (12dpo) until the evening when the cramps started again, only this time more intense. I was positive that my period was coming, and kept running to the bathroom every time I felt anything. By later in the evening all cramps were gone, and have been ever since. My period was supposed to start today, but nothing!

While that in itself doesn’t mean anything yet, the temperature spike I had this morning looked promising. By now, even if my period was a day or two late this cycle, I would expect my temperatures to start dropping.

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I took my last cheap pregnancy test at 6am and it was negative. By afternoon there was still nothing, and I decided to buy a 2-pack of First Response Early Result. A very, very, very faint line came up:

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You can barely tell it’s there, and I didn’t initially notice it either, so I’m not getting my hopes up that this is what I think it might be. I’ll re-test on Monday if nothing shows up in the meantime and see what happens, and hope that my temperature stays elevated.

If it does turn out to be positive it looks like the cramping and spotting 10dpo may have been from implantation and I had a meltdown for nothing.

My hopes are back up, though I’m skeptical. I hope I’m not let down again.