Saturday, July 25, 2009

The Long Search For Answers

Caution: Contents may be disturbing to readers...

For the past 14 months, we have been on a desperate search to find answers as to the cause of Evan's death. We have been told many different things and led down many paths. It has been an incredibly gut-wrenching and horrific ordeal in trying to found out what happened to our precious little boy.

When the autopsy report came back and they told us that Evan had a virus in his lungs that "may" have caused his death, we knew then that there had to be something more. Evan's case then became part of the SUDC (Sudden Unexplained Death in Childhood) program. They have helped us make several connections as well as reviewing his case and conducting more testing. Our first goal was to make sure that Evan didn't have a fatal genetic mutation or disease that could take Noah's life as well. This journey has led us to make calls and requests that parents should never have to do. I had to make the decision to send half of Evan's brain, along with other tissue and organs to San Diego, and the half to the CDC in Atlanta. Not to mention his blood being sent to five different doctor's in various cities. Doctor's and geneticists all over the country have helped us. I had to learn to read his autopsy report! Who wants to read about their child's body being cut apart like a science experiment? These are all things I had to become numb to in order to get them done. Nathan and I desperately wanted more answers!

During our long journey in finding out what happened to Evan, we have come up with many negative answers, as well as differing opinions. We have just recently been told by the CDC (Center For Disease Control) that Evan may have suffocated due to having croup as well. I didn't even know this was possible. According to my own pediatrician, intense coughing and inflammation to the airways can slowly cut of oxygen to the brain. We were told that Evan's brain more than likely shut down first before he even knew what was going on. This would explain why when we found him, he looked peacefully asleep. How does a parent accept this? Again, this starts another whole roller coaster of emotions. First it was the cough medicine and now suffocation? We have been beating ourselves up about this! Why didn't we take him to the ER? Could we have saved his life? Evan didn't really start coughing until he went to bed and had a 99.4 fever. How could something that seems so harmless be so fatal?

Nathan and I have come to the conclusion that we may never know exactly how or why Evan died. I think we just need to work on accepting that this happened, although the constant fear of Noah dying in his sleep plagues our every thought. At least if we had a concrete answer, we could breathe again. I guess this is where I have to really trust in God!

Back in April, we had the rest of Evan's blood sent to PGX Health in Connecticut for a genetic test to detect Long QT Syndrome, a fatal heart disorder. That was also negative. They called a few weeks ago and stated that they had some of his blood left over and that they were sending it to us. WHAT? I have to store my child's blood??? Being that this was the last of Evan's blood left, we had no choice. So, we ordered a medical freezer online. Yesterday that dreaded package came in the mail! It wasn't the cute maternity shirts I ordered from Old Navy, or something special for Noah. It was a frozen package containing Evan's blood leftover from the autopsy! As one could imagine, this sent our emotions into another spiral of sadness, anger, hurt, and whatever else you could think of! This blood is all we have left of our special little boy that used to light up a room with his charm and his smile...


Our trip of a lifetime said...

I'm so sorry Daven, it never ends or so it seems. Alicia and Paul are also waiting for results to come back, determining if indeed Lucas did have Neonatal Hemochromatosis or maybe some other liver disease. Also they are waiting on their own gene test results to see if either of them has some genetic fault that could lead to this happening again. The wait is long and I guess they can't really move forward with planning any more children until they know the results. I just hope they can have more children safely sometime in the future. I am so sad for you and your husband but also so happy that you are having another little baby. I hope you are feeling well and not suffering too much morning sickness.

Scott said...

In reading your last few entries, I couldn't help but relive those days along with you both. I too feel the exact same way. Each day is a blessing, and we'll never know why they were taken from us. We just know that we look forward to the day that they will be the first ones to welcome us home!

Don't hesitate to call us if you guys just want to talk or whatever.

Scott MacKenzie

"While we try and teach our children all about life, our children teach us what life is all about."