Deja Vu – Autopsy Is In

Parker Stults's Autopsy

Parker At Family Camp 2014

Parker At Family Camp Memorial Day 2014

Well… seems to be a bit of deja vu, wouldn't you agree? We shouldn't have a feeling of “I've done this before”, meaning we are sharing news of the Autopsy of Parker or Brisan! Some may disagree in the first place of doing an autopsy with a child of a rare disease but it provides us peace of mind and insight into what was going on behind the scenes in their body. It also may help the Niemann-Pick disease community in the future.

It flat out sucks all the way around. 

So We Arrive…

On April 30, 2015… last Wednesday early afternoon, we had a feeling of a sick stomach with Jennifer saying “I feel like I am going to be sick. I don't want to do this”. I just felt a sense of numbness setting in. We were going to have to “relive” Parker's passing for a moment. We had no idea what to expect in the sense if there was any surprises like we found with Brisan.

We were lead upstairs to the same conference room filled with the same loving doctors and staff members who met with us last year. It was strange because we just “did this”. Who in their right mind should know of this experience for their child(ren) besides maybe the medical professionals delivering the news? After chit chat we all got down to business, sitting there bracing for whatever the news that was about to come our way.

Autopsy Findings

The greatest and dearest words you could ever imagine from a parents view point…coming out of a medical professional's mouth was… “Parker's autopsy findings were consistent with a well loved and nurtured boy that had consistent findings of Niemann-Pick Type C throughout his body”.  They told us that we did everything we could to give him a full and healthy life. A validation that we loved him to the fullest.

To save time, there were no “surprises” in the findings. Parker essentially developed the common cold (Rhinovirus) which QUICKLY turned into pneumonia spreading throughout his lungs. The mucous was just overwhelming towards the end coming out of his mouth and nose… even with suctioning.  In 36 hours, Parker was celebrating with Brisan and Jesus.

Parker's passing didn't seem as mysterious as Brisan's did originally because of how his homecoming went down. In the back of our minds, we were wondering what could possibly have been missed that led to this rapid progression.

It was a rough day to say the least… we felt drained and emotionally bankrupt.

Pete's Puffs

After we completed the autopsy meeting, we put on some smiles and headed down to donate more Kleenex's & Puffs's to Children's Mercy Hospital! We are upwards of 1,000 donated thus far! If you can help in anyway, head on over to Pete's page for more information.

So… What is Next?

We are honestly trying to figure out what is next in our lives. Our life story has abruptly changed and is heading in another direction. Many of you know we are foster parents to 2 little girls at the moment. One of whom we are in the processing of adopting. It never feels like the “right” time to do certain things but God helped us through Brisan & Parker… he'll help us with this. It feels like the right thing to do although it could be just as easy to run in the opposite direction.

You GUYS rock! Thank you for all your support, prayers and love!

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  • Courtney

    I know there are never the “right words” anyone can ever offer you guys. But… We love you, we love the boys, and we love your family.

  • MichaelGStults

    🙂 thank you Courtney!!!! You guys are always so kind and living towards us. We are very grateful!

  • Dona Xemena Barry

    It is awesome to have this kind of positive experience in such a negative situation. I have always said that IF medical professionals (even the Medical Examiners IF an autopsy is done) we endured during Drew’s illness had even a slight ounce of professional and personal touch/understanding to how Drew’s disease progression had been handled and progressed medically, our family would have been able to hold things together just a little better. I am sorry that you have endured the passing of both your children, but know that Drew is celebrating their liberation also. It is great that you could be told that they can see that you loved them and nurtured them well. It seems like such a little thing but it is HUGE in having peace of mind. Hugs and love.–Dona Barry

  • MichaelGStults

    Thank you Dona for the kind words. We wondered why more NPC families don’t have the autopsy done but then again we totally see why you wouldn’t in the same breath. Most of the time you know basically what brought them down.

    We felt this was the best “gift” we could ever give to research where they could see a complete picture of a child with NPC. Those words of they “could see he was well loved” will forever resinate with us. As you are aware, no awesome words can ever bring them back but they are CELEBRATING now because they are now free from NPC!

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