I’m featuring a guest post from my husband, David. As we continue to tell our story of loss, it only makes sense that the next part be told by him. Every parent knows the feeling of guilt. That feeling gets magnified when your child is hurt or dies. This is a glimpse into some of what we’ve been dealing with lately. It is the first time we are sharing this information with anyone.
Nasal Spray…Biggest Decision Of My Life
As I am writing this, it’s been 5 months, 23 days, 7 hours and 27 minutes since my son died. If you haven’t read that post, go ahead and click on that link before continuing, I’ll reference details I won’t go over here. Go ahead, I’ll wait…
Cameron was gone approximately 14 hours before they could officially call it. During that time the doctors and nurses continued to take samples and run tests to determine what caused the sudden death of this little boy who, 12 hours earlier, was right as rain. They never did.
What they did notice was something that may have shown an abnormality in his kidneys. It just happens that Sienna, our youngest, was born with only one kidney (I know we are falling apart). A potential kidney issue now meant we had to be clear-headed enough during this overwhelming, traumatic time to think about her future.
Though an autopsy wasn’t required, we decided to have one done for two reasons.
- To see if there was any issue we may need to be concerned about for Sienna and her kidney.
- In hopes they could figure out the underlying cause of Cameron’s encephalitis. For closure purposes, but also in case it was anything we needed to be worried about for our daughters.
Fast Forward To May
The pathologist performing the autopsy had run every viral and bacterial test she could. Nothing.
She even called on the CDC to help out, looking for rare strains. Nothing.
Then she ran a heavy metals panel where they test for things like iron, lead, copper, and zinc. Four and half months later, hit.
His zinc protoporphyrin was high, but there was something strange. It typically only occurs when you are either deficient in iron or have high levels of lead, neither of which matched Cameron’s situation. This had the pathologist leaning toward a rare hereditary disorder called porphyria (there are several versions).
At this point, the samples they had for Cameron were too degraded for them to perform the genetic testing to confirm it. The only way to get closer to certainty was to have Emily and I tested.
We finally received the results. I have the gene mutation for Hereditary Coproporphyria. It’s only seen active in 1 in 500,000 cases (.0002% chance of having it). Most people never have symptoms. In all likelihood, it was passed to Cameron. It’s just too big of a coincidence for it to not be it.
What Does This Have to Do With Nasal Spray?
On Christmas Eve Cameron started crying, HARD, but brief about his ear. Every parent knows it… ear infection. Being Christmas Eve and not wanting to spend Christmas in the ER if it became worse, we decided we should take him to the urgent care before they closed. It was already 4pm and they closed at 5pm that day.
I volunteered and we were in and out in about 20 minutes. As expected, the doctor said he had an ear infection. He prescribed an antibiotic and suggested Afrin nasal spray for a decongestant (I know, I finally get to the nasal spray).
Evidently a huge factor in porphyria attacks are certain drugs. Well, turns out oxymetazoline (active ingredient in the nasal spray) is “suspected” to cause a porphyria attack. It was too big of a coincidence that he had an attack after he used it. To me, it was confirmed.
I had suspected from the beginning, while still alive, the nasal spray had something to do with him going to the hospital that night. It was the only thing that was different. I had guilt and regret before ever finding out I had the genetic disorder.
Why? Because I’ve never used nasal spray. I won’t touch it. Not me. Not going to happen, even if the doctor suggests it I would never buy it. So why in the hell did I buy it for him?!
It’s been 5 months, 24 days, 16 hours, and 21 minutes since I made the decision to buy my son nasal spray. The decision that changed our lives forever.
I’m so sorry Cameron.
Additional Posts Following Cameron’s Story:
- Our Story of Child Loss
- Why I Share Our Story – Blogging Mission
- Remembering Our Loved Ones – Cameron’s Reindeer Drive
We think of you all often and with love. You did everything possible to protect Cameron, knowing what you knew at the time. I doubt any parent would have done differently.
Thanks, Kerry. We know that logically. However, it’s hard to not still feel guilty. I think it’s just a normal part of being a parent.
Not even close to your fault. It must be a huge relief to have some answers. Poor kid, .0002% Heart breaking. At least now you know better how to look after the girls. Love to you both.
It is a relief to start getting answers. It’s been a long process to get here. Unfortunately, it’s probably going to be a long road to get the rest of them. Such is our new normal. Love back at you!
David I am sorry sorry for the pain your feeling but sweetie this is no way any fault of yours how could you have know about this genetic thing none of us ever has this tested unless there is a drastic reason . Just wanted to know that I love you and would never blame you or anyone that finds something like this out after a tragedy such as Camerons
Thanks! No matter how much we know there was nothing we could do, even that feeling of being helpless makes you feel guilty. Love you.
I am so very sorry for your loss.
Honey how well I know that feeling of helplessness I have been there too. Believe me when I say that whether there are 3 kids or 6 you never forget things they did or said its been 43 years for me but she will always be there fresh in my mind but the pain does get more tolerable it just takes time.You’ll have have those wonderful memories of all he did and said and those two beautiful busy girls will be your biggest salvation believe me my kids were what I lived for every day they were and still are a very important thing in my life and all my wonderful grand and great children produced from their relationships that I love so much and Thank God for you are all my life.Always know I am here anytime you or David just need to chat or unload I love you both a lot your great parents PLEASE never doubt that.
Thanks, Gram. Love you too!
No one will ever blame you. sending hugs and think of you all the time!
Thanks, Lisa. I’m sure you know the mom guilt feeling. Regardless of whether or not you did anything, you still feel guilty because it impacted your child. Hope you guys are doing well!
My son just passed away but it was from suicide this July. Your story makes me feel connected to other families. A lot of my child’s issues were genetic and also pharmaceutical so really we are in the same boat and my child was fine a few hours and days before and then gone.
My heart breaks for us. I still have 3 other teens. I love my family and my children but I am empty. Mediums already helped me. But when events are over I just miss my child.
I understand the guilt of the nose spray. A long time ago my son wanted to quit smoking and my
Best friend in the healthcare field suggested I tell him to try chantix. Well I told him! He got it and only took a few days and I wonder if that was the start of the end. Only God knows. At least our kids are peaceful and not in pain and will meet us when we cross over. Thank you for sharing. It helps me not to feel so alone.
I am so sorry you and your family had to go through this. We all make these decisions as parents every day. You never could have known the end result. I’m certain Cameron wouldn’t blame you and loves you just the same. Sending love to you and your family.
You are absolutely right! Every day as parents we make decisions and take risks, some of which we don’t fully understand when the decision is made. There is no way we could have ever known. Thanks for your comment and stopping by!
We listen to our doctors and that’s what you were doing. I am glad you have some sort of closure as to the cause of death after all this time. Speaking out like you are doing is healthy for you both, keep doing it. You need to do all that you can for you and your girls. My parents never talked to anyone about the sudden loss of their 3-year-old girl, but that was before internet or before psychology was as talked about. I believe this is partly what destroyed my dad. My thoughts and all my best wishes to you and your family.
It definitely helps me in the healing process to share him and our story. Grief and the loss of a child is such a difficult thing to process. It’s unnatural. It changes you as a person and it’s easy to feel like you are alone…mostly because your grief journey is so personal that you really are doing it alone. The internet helps to let you know there are others experiencing similar journeys. Provide some support to grieve in tandem. Love to you and your family!
I’m so sorry for your loss.
Thank you, Cindy!
this is what my grief counselor told me: “If your son had not died you would not question your actions. other parents make these choices daily and their children are alive and well.” I hold onto these words when I doubt myself and wish I had chosen differently. so sorry for your loss. so very, very sorry.
I love this advice. It’s so true. I have replayed the “what ifs” over and over (still do). However, I know that the decisions we made were correct. There wasn’t anything telling us another choice could have been an option. Yet, I will always know a part of this was our actions. I also know we didn’t do anything that should have resulted in this. Hugs to you.
Hello to both of you!
I am so incredibly sorry to hear things turned out as they did. I cried right along as I read these posts.
If you ever need anything- send me an email and i will do more than my best to help.
Also a parent myself.
God bless and best wishes.
That is very sweet. Thanks for stopping by. Much love!
I read your wife’s post that was shared by Her View From Home on Facebook and my heart just stopped. As I type I have this lump in my throat because I can feel some of your pain. I have 3 children and can not imagine what it must feel like to loose one. I also know that no amount of us, complete strangers, tell you and your wife that it’s not your fault, because I know, as a parent, we always blame ourselves. So, I want to say thank you so much for sharing your story with us, giving us a glimpse of who your little boy is, and for also raising awareness about this rare genetic disease. Be gentle to yourselves because you have 2 girls that see you as their world.
My heart breaks for your family. What an unthinkable loss.
I know my comment won’t change how you feel but I need to echo the many comments before me that this is of no fault of your own. As parents, we do the best we can and we can’t do better than that.
Thank you for sharing so transparently. I hate that you have to hurt like this.
My heart broke when I read that last line. It is in no way your fault, which of course you probably know on a logical level. I hope things have been getting better since this was written and I hope you’ve learned not to blame yourself ? your story is so heart breaking. I’m glad you found answers. I’m sure it doesn’t make anything easier, but hopefully it provided a tiny bit of closure.
Not your fault, never. I’m sure that from wherever he is he loves you so, so much! And he is proud. Hopefully He made friends and they watch over all of us. *Hugs.*
how beautiful that he chose you to live out his little life with. he knew you would love him with your whole hearts. maybe before we come here we agree with God as to who will parent is, the lessons we learn, and teach… you are amazing, remarkable and heroes in my eyes. the fact you shared this is a gift from all of you, as you have no idea how you have touched so many. thank you and God bless.
I’m so sorry for your loss and that comes from the bottom of my heart. Words cannot explain what it feels like to be a bereaved parent. I know you blame yourselves but it wasn’t your fault. I also lost my daughter,she was 36 years old ,3 days before her 37th birthday. I lost her on 11/30/2017. I still blame myself for not realizing that she was septic. She died from septic shock right in front of my eyes in the emergency room. I relive that night everyday. I’m also a RN so I feel really stupid for not seeing the signs and symptoms of sepsis. I pray for you and your family.
I have no words.
I just want to thank you, your blog helped me today.
As everyone is who reads these blogs my heart is so heavy for you and your family. Although I know it has been some time.. years since Cameron’s passing I know that the pain is there… fresh as ever. I want to ask if I may.. you say you never would have used nasal spray , even if told to by a doctor. May I ask why? I’m just curious, it seems to me such a normal thing to have in your home medicine chest. I’ve used it so many times myself and in my children. (Never again). But I just wonder .. why did you feel that way about nasal spray? I know you do know that you are not responsible for your child’s early passing and I know you know any guilt you may feel is not fairly placed. You are a loving and caring parent, a father who would have certainly changed places with his son if given the chance. I thank you for sharing your story and especially your own post. Nasal spray is not something I would have ever thought twice about. But it’s not just nasal spray is it. I realize I give my children far too much medication. Trust in doctors, pharmacy’s and pharmaceutical companies… and their own little bodies to be strong enough to handle these ingredients I know nothing about or how they could be affected by heredity or just anything going on inside my child’s small body at any time. I will think twice from now on before giving any kind of medication to my children. Sharing your story I’m sure will unknowingly save a child’s life one day. God bless you!! I will pray for you. I noticed that no where in yours or your wife’s stories was God mentioned. I know that losing a child can leave you questioning faith or a God that could let this happen. However, I urge you if you have not already please look to God for peace. Be brave in your fear and reach to God.. lead your family to find solace in his word. He will put his arms around you and show you true love and peace. He already has.. perhaps you just have not had the time to really notice. Anyway he is there, He loves you all and He is waiting for you to ask him to carry you. God bless you all … I will pray for you. I will pray for Cameron and your wife and daughters. I found your blog tonight while looking for prayer about losing a child. My nephew passed today. I wanted to send a prayer or a poem to his momma. Anyway, I came upon your page and felt urged to share God with you. I hope in some tiny small way I could help you as you have helped me tonight. 🙏🏼💙
The reason for no nasal spray is because the active ingredient is what caused my son’s porphyria attack. Certain medications are triggers for this rare blood disease and cause your blood to not properly create red blood cells and carry oxygen through the body. So, while nasal spray IS a normal thing to use and have in your medicine cabinet… for my son it turned out to be the thing that initiated his issues that night.