Part 15: I Killed My Daughter
Yep, I think I had this title picked out a LONG time ago.
Why, you say?
Well, I AM a marketing major.... I was taught to grab a reader's attention. Secondly, I'm a teacher... it's engrained in us that we need to have some sort of "hook", some engaging preview to the lesson ahead so our students are motivated to pay attention.
Did it work? Do I have your attention?
Good. Because for me, this is the HARDEST and most DIFFICULT part of my daughter's story. It's the worst to relive, to remember, to write, to think about... and yet there's rarely a day that goes by where I don't remember this part. I try to reframe the title in my head, to place blame elsewhere, to deny, to make excuses. Nothing works. It's there, haunting me forever.
I killed her. I did it. It's my fault.
The Devil sure is good. He knows our weak spots. He knows where we are vulnerable. And when I say he got me good, man... he sure did get me good.
But My God is Greater. My God is Stronger. How do I know that? He tells me in his Word...
Romans 8:28 says "And we know that in all things God works for the good of those who love him, who have been called according to his purpose."
Jeremiah 29:11 says "For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future."
and our "verse" Romans 9:23 "What if he did this to make the riches of his glory known to the objects of his mercy, whom he prepared in advance for glory."
Sure, you can tell me it's not my fault. You can tell me I didn't do this intentionally. You can claim ignorance for me.... shoot, you can tell me whatever you want, but my thoughts still go back to the original.... These three verses, along with thoughts of my two beautiful children and husband, kept me from killing myself. I wasn't sure my husband would be able to handle things without me, and I definitely didn't want to be responsible for more grief. Plus I didn't think I could actually go through with killing myself. I just knew I wanted the pain to end.
So is that enough of an attention-grabber for you? Are you ready? I sure wasn't. Make sure you have tissue close by.
Enter Tuesday evening, October 16, 2012. It's funny, I didn't realize the date until I started writing this part. This horrible, horrible realization began exactly one month after my daughter took her last breath.
My phone rings. It's my pediatrician calling. Not unusual. He's an awesome doctor. He's a researcher, and a gazillion different tests were ordered during Addy's 14 hours at the hospital. Every single time he received a test result, he researched and followed through.
A few days after her death, he received test results showing elevated iron levels in her blood. An investigation into that led him to neonatal hemachromatosis. It's a genetic disorder that's typically fatal for infants, and if that was the official diagnosis, we would need to consult a specialist if we ever wanted to get pregnant again. I remember feeling somewhat relieved at that possibility, believing that my child was born sick and really never meant to be... that we were oblivious and able to bring her home and enjoy 9 days with her rather than being stuck in the NICU watching her die. Morbid, yes... but for some reason that was comforting.
Too bad it wasn't that. I'd like to say I'd give anything to go back to that type of diagnosis.
Ok, so back to the Tuesday evening phone call. I just didn't want you wondering why my pediatrician is calling me in the evening. He really is just a great detective, following every lead possible and trying to piece together the puzzle of her death. I'm sure he felt some sort of responsibility, thinking perhaps he missed something. Shoot, we all did. Has he ever said those words specifically to me? No. Like I said, I was looking for something or someone to blame.... not just some freak accident. I needed a reason. I needed answers.
I rambled again, didn't I? Can you see I'm stalling? I'm trying to save you from the intense pain, the feeling like your insides have just been ripped out.... it's not just a Band-aid you can just rip off really quickly.
So ok. He calls, asks how we are, the normal greeting hello, etc., etc. Then he says he's gotten a few other test results back and would like me to go and get bloodwork done so he can compare.
Why didn't I just say ok and let it go? Why? Curiosity killed the cat? I just couldn't fathom what my bloodwork had to do with hers.
So I asked. What are you looking for, doc? What test are you having them run? I mean, of course I'll go get the lab work done, no problem at all. I just sorta want to know what tree he's barking up now.
Doc: Well, I want to test your antibody levels for HSV 1 and HSV 2. (Or something to that effect. It really doesn't matter, because I didn't have a clue what he was talking about.)
Me: What's HSV 1 and HSV 2, doc?
Doc: Herpes Simplex.
Me: I don't have herpes. They do an STD test as part of my prenatals, and I know I've been tested for genital herpes.
Doc: Herpes 1. Cold Sores.
Me: But I don't have cold sores either, doc. That's my husband. Wait a sec.... why do you think I have cold sores? What new test result have you gotten? Is the autopsy back?
Doc: Long pause... yes, the autopsy is back.
Me: And it lists a cause of death?
Doc. Yes. Herpes Virus Type 1, Cold Sores.
Me: Ok, but I already told you, I don't have cold sores. That's Granville, not me. How are you thinking these are related? (I must be really naive.... you probably already know where this is going.)
Doc: Well, you said you had sores on your nipples, and Addison had contact with those sores. An antibody level test will tell us if you have the virus and if you presently had an infection. (I know he said some other medical jargon here, but that's all I remember.)
Me: Ok, sure I'll go have bloodwork done. Anything to help.
We hang up and it still hasn't hit me. I remember sinking down on the couch, going over the details of our conversation in my head. It's like a slow, painful realization.....
Tears have begun falling down my cheeks and I don't even remember starting to cry or feeling like I was going to cry. In fact, it took me a minute to realize WHY I was crying.
And I thought the whole birth/death certificate incident was hard...
It hit me like a ton of bricks. Everything went from super slow-motion to flying a mile a minute. All the pieces connected in one split second.
I can't breathe. Someone literally has a hand wrapped around my throat. I want to scream, but I can't. I want to speak, but words won't form. I'm numb. Mute. Dying.
My husband becomes painfully aware that something is wrong and is by my side in a second. I want to tell him, but I'm not sure I can speak into existence the connection my doctor just made.
If I don't speak it, it's not real. It just becomes a random thought, just someone's opinion.
He's wrong. Of course he's wrong. No way is this true.
Did he REALLY just tell me I nursed my daughter to death? Well, technically no. He didn't use those words. I did.
He said he thought, or had a hunch, that the sores I told him about may have been cold sores. And that somehow, something as ridiculously common as cold sores, KILLED my daughter.
He must be wrong. I don't have cold sores. I've never had cold sores. My husband has cold sores. Everytime he feels cold sores coming on, he doesn't kiss me on the mouth. He's really careful. We'd been married 4 years, dating 5, and I never got cold sores. Nah, no way. He's careful.
Isn't he? Maybe just once, he didn't know he had one.... maybe the doctor was right? But aren't cold sores on your mouth?
Google took care of that question. They are typically on the mouth, but really can be anywhere you have an open cut or wound and make contact with a cold sore. Fingers, mouth, nipples... genital area. Apparently they call Herpes 1 anything waist up. Herpes 2 is waist down. Same virus, different location.
My mind is spinning a mile a minute. No way is this real. He just told me I nursed my daughter to death.
I did. I nursed her.
A split second decision to do something so completely natural cost my daughter her life?
I never wanted to nurse her. I felt guilty. I thought I would at least try and nurse her while I was home, you know, give her that good stuff, the "gold" milk, give her the BEST chance at life.
And he just basically told me it killed her. My decision killed her. My decision ended her life.
I wanted the floor to open up and swallow me whole. My mind was going back and forth between actually believing him and denying his story.
I called a medical friend. No way, she says. Nope. Addy was sick before she was born. You didn't do this. No way. She went over all the "abnormal" things Addy did that week, like sleep ALL the time. She reminded me that Addy's long sleep time was from the beginning. I wasn't so sure, but it did sound a LOT better than me killing her. I remember her sleeping rather normal the first day or two. She was born Thursday and it wasn't until Saturday that I first noticed she slept a reallllly long time.
Now I'm confused. One medical person says one thing, the other says something completely different. I'm still in shock.
It's easier to believe the friend, of course. That takes all the blame off of me.
So I go get the lab work done the next day. Here's what the results said, for those of you with knowledge of how to read these things.
I called my OB and he got the results almost immediately. I went to see him for my postpartum checkup and he explained what they meant. He said I did indeed have the cold sore virus. He said my pediatrician ordered a test that would tell him 1) IF I had the virus, and 2) If I had just recently been infected, and 3) If I had just had an outbreak. Apparently all answers were yes.
I asked him if he agreed with the pediatrician, that the blisters on my nipples were herpes cold sores. His "yes" was without any hesitation.
But no one ever tested them, I said. No one cultured them. No one worried about them. Not even you. They told me Addy could nurse on them. EVERYONE said it was okay.
I'm not sure what he said to me. I just knew I didn't want to lose it in my OB's office. So I calmly finished my appointment and left.
I'm getting pretty good at putting on a mask. I'm dying inside, completely dying. Two doctors have just confirmed that my decision to nurse my daughter killed her.
Sometime later that week or next, I spoke with my pediatrician. I told him the OB agreed with him, but my medical friend did not. He said the PICU doctor also agreed with him. The not-so-great-bedside-manner-but-awesome-at-trying-to-save-my-daughter doctor agreed with him.
3/4
75%
Not great.
I'm devastated. Completely, absolutely, utterly, entirely devastated.
I did this. I killed my daughter.
I wasn't going to nurse her. I wasn't. I had NO intention of doing it. None whatsoever.
I had a weak moment. Felt guilty.
BUT I ASKED IF IT WAS OK.
I pointed out the blisters. I said they hurt. I said they weren't going away. I told them how long they'd been there.
The post-op staff looked at them and said it was okay.
The nursery staff looked at them and said it was okay.
My friend with 5 kids looked at them and said it was okay.
The LACTATION CONSULTANT said it was okay.
My medical friend said it was okay.
The scary nurse said it was staph, then changed her mind... at least she insisted a doc look at it.
The on-call OB said it was okay, ordered me the Bacitracin ointment.
My husband and I went back through the calendar of when the blisters appeared and yes, he did have a cold sore at that time. I'm not going to delve into any TMI detail on how they arrived at their location on me, but it did confirm to us that the verdict was indeed plausible.
I can't remember who first suggested I contact a lawyer. Many people did. I wasn't sure what exactly a lawyer was going to do... my blisters were never tested, so to me I didn't have exact proof.
So I called a recommended attorney's office. They asked for medical records. I went and picked them up, and saw that a copy of the autopsy was included.
I'm including little snippets of the autopsy for you. If having the complete report or any of these records would help you in any way, please contact me and I'll send it to you.
Here's the cause of death page....
I'm no medical person, but in part A up there it says she had the cold sore virus on the tip of her tongue, her esophagus, and her liver.
I don't know about you, but looks like she swallowed poison. Here's another part that really gets me...
Focal erosions... had to look that one up too. Seems her esophagus was like a mountain terrain.... no wonder she wouldn't eat. It was so incredibly painful. My daughter's poor body was in shock from the pain. No wonder she slept all the time. The overly sleepy child syndrome started at right around 48 hours, I remember. She was infected just that quickly.
Reading an autopsy is no picnic. It details everything about my precious baby girl, from the weight of her heart (55 grams) and brain (400 grams). That means these organs were actually removed from her body and placed on a scale. I can't believe I'm actually reading this. There's a reason only medical people read these things. They can stomach it. I don't know how many times I cried and sobbed and blubbered over this report.
It was so matter-of-fact. So impersonal. Didn't this person know this was my baby girl?
Of course he did. He's just doing his job.
His job though... his ever-so-thorough job has cost me my sanity. My peace. My hope. My joy. My trust in doctors. My trust in myself.
I did this. My decision cost Addison Grace LeCroix her precious life.
It's my fault.
I killed my daughter.
