Six Months and Ten Days

Have you ever experienced something that left your soul paralyzed? You wake up every morning and put on a brave face, but inside you are dying a little more each day...hour by hour, minute by minute, second by second...feeling your soul and spark slowly fading while waiting for something that is completely out of your control.

Six months and ten days I spent paralyzed; living with constant internal fear and anxiety waiting to be told that I was responsible for my child's death. Six months and ten days is how long it took the Medical Examiner to release August's death certificate and declare a cause and manner of death.

There were many things I did not know about our society until I had August. Many of the things that learned I would happily unlearn if it were possible. One of those things is what happens when a child dies without a diagnosed terminal illness or obvious trauma, such as an auto accident.

When a child dies for no obvious reason the state immediately takes over - the moment time of death is called. A mandatory autopsy is ordered. The parents have absolutely no right to stop it. The sad fact is that more often than not, when a child unexpectedly dies, it is the fault of a parent. Statistics show that when a child's death is classified as a homicide, 75% to 88% of the time it is by a parent's hand. When a child experiences sudden unexplained death, 72% of the time it is because of the parents' actions, or lack there of...even if not intentional.

When August died, the responding EMS and team at the emergency department did not know me or August. All they knew is a precious three year old ended up in front of them and they were unable to restore life back to his body. They did not know his medical history...they just knew this little boy died and they had zero idea why.

The moment time of death is called in such a scenario, no one is allowed to alter or move the body. I understand the reasons behind this...evidence has to be preserved. But as a parent who just lost her child, not being able to hold my baby's body was the worst form of torture imaginable.

August was intubated when the EMS and the ER team were trying to bring him back. He also messed his diaper, as is the case when life leaves the body. I asked the staff if I could change him, because anyone who knows me knows I never let August sit in a dirty diaper. I also asked them to remove the tube in his throat so Alrik did not have to say goodbye to his brother with medical equipment coming out of his body. It was not allowed.

I remember the moment so vividly. I asked if I could clean him up and have the tube removed. The nurse said softly "I am sorry. That is not possible. Only the Medical Examiner can remove things at this point." That realization hit me like a freight train. I said "oh, I see." I saw that August's passing was unexplained and his death was now being looked at as potentially nefarious. I saw that I was potentially a suspect in his death. I didn't blame the ER staff. I am actually happy the policies exist for those cases where a child is murdered.

Of course, when I shared my realization with loved ones they immediately tried to reassure me by saying "of course they aren't blaming you" and "they know you took great care of him." But the truth is that until the ME said otherwise, I was to blame. For six months and ten days I lived with that fact. No one could absolve me of that fear and guilt.

Why would I have that fear? When you are a medical mom, you live with the fear of your choices on a daily basis. Am I making the right decision for my child? It is an impossibly difficult situation to be in. While I am super appreciative of the many medical advancements western medicine has made, there is still so much that our doctors do not know and so many things they cannot fix. I, of course, wanted the doctors to fix my child. The first days of August's life I pleaded with the doctors to do whatever it took to heal my baby. But the hard truth is that some things are beyond healing and fixing. Some things are truly up to God, the universe, fate, the Devine...whatever higher power you subscribe to. I realized in the first week of August's life that western medicine could not fix my baby.

So David and I did what we believed was the logical next step. We decided that we wanted our boy to live as good of a life as possible for as long as the universe would let us keep him. We decided that we would rather August have a brief but beautiful life over having a longer life plagued with invasive medical procedures and medicines that had worse side effects than the conditions they were treating.

We were blessed that most of our medical team respected our wishes and saw that both David and I were reasonable people that could take in information and act with logic instead of emotion. But there were a handful of doctors that disagreed with our approach...and one doctor in particular that made it blatantly obvious he felt we were not making the right decisions for our child and tried to pressure me in to invasive procedures that I believed were unnecessary and would only cause pain and discomfort.

Knowing that my baby was being autopsied to rule out a nefarious end, and knowing there was a very vocal doctor that did not agree with me...it was a real fear that the ME would speak with this doctor and decide I was negligent or culpable in my child's death. While I still have no idea if the ME ever spoke with that doctor, or any other doctor that treated August, I was still terrified. While I don't necessarily believe I was truly at risk of being prosecuted criminally for my child's death, I did legitimately fear I would be found responsible. How could I live with myself if the ME found that August died because of something I did to him, or something I didn't do for him, but should have? Just because the law and the courts may not find me guilty of a crime, my conscience could very well sentence me to a lifetime of guilt.

For six months and ten days I quietly lived with that. I could not even begin to think about healing from my grief. I was paralyzed. Six months and ten days after my son died, I was granted a gift I never imagined I would need...they found no medically dianosable reason why August died. Tests were ran and then reran. The ME looked at everything she could possibly look at to find the cause of my child's death...and she came up with nothing. I did nothing that contributed to August's death and there is no "reason" why August died.

I choose to believe that my son chose to depart this world. I have reasons that I will share in a future blog that support this belief. But for now, being freed from the guilt that I might have caused my child's death, I can finally choose to begin the process of healing and finding my way through this life without my sweet August.

"As time passes, all the things you are afraid of will come and they will go, and you will be alright." - Stevie Nicks