Hello all! I know it’s been a while since I last wrote. There are a few reasons for that – the autopsy results we had been anxiously awaiting came in, but we were not ready to share with the whole world yet. We also wanted to focus on the holidays and spend time with friends and family.
Anyway, the last time I wrote was shortly after Jared had returned from a 5-week trip to California for work. That time was also week 16 of the “10-16 week” timeline we were expected to wait for autopsy results. At that point, we had waited so long, I really was not going to be surprised if it was pushed another week. But much to my relief, the Medical Examiner contacted me Wednesday, November 17th (during week 16) about arranging a time to meet her at her office to go over the results. I could not believe it. I felt some comfort knowing we would finally have some answers, but still quite a bit of anxiety.
We decided to meet her mid-afternoon that Friday. We figured having the weekend to digest the results would be helpful before going back to work on Monday. The night before, Jared and I sat on the couch, wondering about all the possibilities. I also had an immense concern we were going to show up the ME’s office and I was going to be arrested. You see, the day Stevie passed away, I was home alone and therefore my account of happened was the only data the Sheriff’s office had for several months. It was not until 1-2 months after Stevie passed that for the first time I thought about how I was the primary suspect in my daughter’s death. It is incredibly terrifying to think about something like that, on top of the trauma of losing your child. Even throughout the weeks we were waiting for the autopsy results and talking the night before our meeting, I was able to rationalize that being arrested was not likely going to happen – I knew that any significant findings of abuse or anything else would have been identified early on, and the investigator likely would not have allowed me to continue checking in with ME along the way while the autopsy was still ongoing. But for whatever reason, even while knowing the latter, I was still frozen with panic at the thought I could be taken away to jail the next day. All I could do was press on, go to work, and hope for the best the following afternoon.
On top of that anxiety, I was also having a really difficult time at work the week leading up to our meeting with the ME. My co-worker was travelling so I was manning the office alone. For whatever reason, we were being crushed with tons of taskers that week, all with deadlines in the same week. I was also dealing with another organization regarding one of our personnel having to report a few days late to a deployment; these dealings culminated in the other organization raising the issue up to our base commander’s attention, despite what was discussed and in the best interests of the deployer.
I bring this story up because I left the office right before our meeting with the ME in such a poor mental state – I was so overwhelmed with work and dealing with this other organization. I had to calm myself down on the drive to the ME’s office and remind myself “What really matters here? Stevie. Stevie is most important”.
The saying “be kind to people, you never know what they’re going through” resonates too much with me now.
So, finally we arrived at the ME’s office. She met us in a conference room and handed us each a massive copy of the report. She was chatting right from the beginning while I was half listening and quickly scanning the document in front of me searching for a cause of death….of course, it was on the second page.
Much to our complete and utter surprise: “Cause of Death: Bilateral Neutrophilic Pneumonia”
………………………………………………………….what? ……………………..essentially, pneumonia in both lungs.
To give a little background – Stevie had vomited a few times leading up to her passing. She was also lethargic/sleeping a lot more, and her appetite had decreased so she was not eating as much as usual. We had called the Pediatrician that week for consult, assuming it was some type of stomach bug. We supplemented single ounces of Pedialyte, as recommended by the nurse, until she could keep it down for several hours.
So……………pneumonia was really shocking considering most of the time, people think of coughing and shortness of breath as primary symptoms of pneumonia – and Stevie had none of those. She also never had a fever, which I kept checking for incessantly. I think her cause of death hit Jared worse than me initially, considering pneumonia is preventable and treatable; Jared was pretty angry about it.
But, that’s not all.
The ME found that Stevie was retaining iron in her liver, and her liver also had some fatty deposits on it. The ME was unsure what this was related to and/or why it had happened, but had some theories it may have been some type of iron storage or metabolic disorder. The ME suggested we get genetic testing done to rule out any genetic/hereditary disorders. The ME also mentioned the possibility – but could not say for certain - of Gestational Alloimmune Liver Disease (GALD) and/or Neonatal Hemochromatosis (NH). GALD/NH is not genetic but can have a high likelihood of reoccurring with future pregnancies (do not ask me to explain that, because I have no idea how that works).
Gestational alloimmune liver disease (GALD) is initiated by maternal antibodies that attack fetal liver cells. The fetal immune response to the antibodies causes liver damage. This can then lead to NH, which is liver disease. GALD is extremely rare, but also potentially underdiagnosed because many babies do not make it past the second or third trimester….but of course there are other cases in which babies have lived a few weeks after birth without many complications. The good news with GALD is that immunoglobulin IV treatment has been proven effective for future pregnancies involving GALD – in essence, the mother receives IV treatment once a week from 18 weeks gestation until delivery…..extensive but effective.
All in all, it is the ME’s theory, as well as our theory and our Pediatrician’s theory that something significant was happening with Stevie’s liver that in turn lowered her immune system, which made her more susceptible to fight off infection such as pneumonia.
The following week after receiving the results we proceeded with getting referred for genetic testing. Thankfully we got a referral quickly and got an appointment with a genetic counselor the week after Thanksgiving. We waited until January 3rd for results. And, to our further relief, of the disorders we were tested for (302 genes were looked at), neither of us are carriers of the same disorders, therefore there is a 0% chance of passing anything on to future children.
However, as we are finding with this, the more we know the more questions we end up having. Now we are curious then, as to what happened to Stevie if we did not pass on any disorders to her (of the ones we were tested for).
In turn, we have made the decision to move forward with what is called full exome sequencing. Essentially, the coroner’s office will release a sample of Stevie’s DNA to a lab, which will analyze every one of her genes for disorders. We should be hearing from our genetic counselor at the end of this week as to how to go about getting the sample sent to the lab.
We are hoping this full exome sequencing process could rule out GALD/NH as well.
While we wait for exome sequencing to happen/complete, we also got referred to a Maternal Fetal Medicine doctor (an OB/GYN with MFM practice) last week. We met with her to determine her thoughts on the possibility of GALD/NH, and if I could be treated for it during future pregnancides if we find that we cannot rule out GALD/NH after full exome comes back.
Not surprisingly, she is referring us to a Pediatric Hepatologist. She is doing this because:
1) Based on what she is reading, GALD/NH presents liver issues much earlier than the time in which Stevie lived (i.e. she is inclined to believe Stevie would have presented liver issues shortly after birth or in the days following birth….not 8 weeks later)
2) She is not an expert in pediatric liver diseases and wants to see if such an expert can offer any other theories as to what Stevie may have had
The good news is, she said if there is no other way to rule out GALD/NH, her team is willing to treat me during my next pregnancy as a precaution for GALD/NH.
So, that’s basically what we have been doing the last few months and where we stand now. I would be lying if I said it wasn’t exhausting having to wait for the autopsy results, only to find that we would have to meet with 3 other doctors and conduct two rounds of genetic testing in an attempt to find more answers. But our energy is fueled by our desire to have more children in the future, and we want to have as much data as we can in order to move forward responsibly in that endeavor.
I want to say thank you to everyone that has been following this blog and allowing me to share so much about our journey. It really helped me with my own healing process to put my emotions, thoughts and feelings down on paper – as vulnerable as it may be, and as difficult as it is sometimes, I always feel much better afterwards.
Our grief is still very much present, the emotions still come in waves, and there is not a day that goes by that we do not think about our Stevie girl. We have been going to our support group regularly and will continue to for the foreseeable future.
I’m unsure if I will continue to write any blog posts right now….but I’ll wait and see.
One Positive Thing:
I recently stepped back into a crossfit gym. I had been working out at home for almost two years due to COVID and throughout the pregnancy…but I really needed to get back to the community/camaraderie aspect of crossfit. I really missed the people! It’s so great to be back and feel that familiar soreness (haha).