Thursday, June 23, 2005

And the answer is...

...there is no answer. So in the absence of an answer, we're guessing it was my fault. Sort of.

I have sooo much blog material, I just might have to make this one in parts.

I called the Doctor's office yesterday to confirm that they would, indeed, have the autopsy results to go over with us. No sense in Steve taking off work if we weren't going to have the mental breakdown that would require his attendance. First, the nurse, Margie (lovely woman), told me that my doctor is on vacation this week. Huh? OK...so who am I seeing? Dr. B...a wonderful doctor who held my hand and helped counsel us through the labor process with Alex--whose name I can not spell because it's Polish and requires at least a couple z's that I can't remember where to place. So, ok, I'll see Dr. B. Will the autopsy results be there? Yes, I was told.

So we got to the doctor's office today. The receptionist checked me in and attempted to collect the required $15 copay for a regular visit. I told her this was a postpartum checkup and she got that chipper little look on her face that people get when they think they're dealing with a new mommy. She said, "Oh...postpartum...I'll change that then." She crossed off the need for the $15 copay and gave me that happy smile that said she obviously had NO idea why I was there. I could have thrown up on her.

Then we got into the exam room and Margie did the obligatory blood pressure check and game of 20 questions. She dutifully noted all the answers in my file and scurried off. While we waited, Steve and I complained to one another that we wished they would leave the file in the room while we were waiting so at least we could snoop through it. Instead, we were left to sit there in silence and contemplate what the doctor was going to tell us.

After what seemed like an incredibly long wait, but I'm sure was only a few minutes, Dr. B. bounced into the exam room, big smile on his face.

"Hi guys, how are you today?"

No response from us...confused looks to on another and small shrugs that indicated we were so-so.

"So what's going on with you?" he happily asked.

It hit me in that moment...this man had no clue who we were or why we were there.

"Um...not much," I replied, a bit at a loss for words.

"I think we may have met once before," he half asked with a questioning look on his face, growing at least a little bit uncomfortable with the situation.

I finally decided to let him off the hook, "Uh, yeah, in the hospital six weeks ago...our baby was stillborn."

Lightbulb on!

He turned and looked quickly at my file. Then turned back and said, "Oh, yes, I remember, you were there for such a long time. How are you doing now?"

OH MY FREAKING HELL!!!

"Well, I've stopped sobbing uncontrollably, so that's progress, right?" I asked.

Nervous laughter all around.

Let's just say the rest of the exam was routine. I don't need to share those details...and I'm sure you don't really want them.

Dr. B. excused himself and said he's like to talk with us in his office...because he's, "sure we have some questions" for him.

We headed over to his office where he was sitting at his desk reading (perhaps for the first time?) what we thought was the autopsy report. WELL...it was only the preliminary autopsy report. Do you know what they put in the preliminary autopsy report? They look at the baby, the placenta and the umbilical cord and write down what they see.

So here's what we got...

Big baby...9lbs 1oz at 35 weeks 5 days (delivery).

No obvious problems other than large size and infection of placenta.

Infection of placenta could have been because of breaking the water and subsequent exams, etc. Infection could have been there before the water was broken, though unlikely because I exhibited no signs of infection until after my water was broken.

So most likely...big baby...uncontrolled gestational diabetes.

Ummmm...Question:
I was tested THREE times. I ate reasonably well according to the gestational diabetes diet. How could I have had gestational diabetes without it showing on even one of those tests? And IF I had it, why was he so big if I was eating healthy?

Answer:
We don't know.

Question:
Will it happen again?

Answer:
We don't know. What we can do is monitor any subsequent pregnancy differently (more) in order to address any problems before they become problems (serial ultrasounds, weekly non-stress tests, recorded kick count exercises, gestational diabetes diet and blood monitoring).

Question:
If the THREE blood test I took showed no gestational diabetes...what good would monitoring do?

Answer:
Well we really don't know if it WAS gestational diabetes, but that's what we can assume from the size of the baby. (notice how he didn't really answer my question?)

Do you notice a theme here? We don't know ANYTHING!

At one point he said to Steve, "Your son was perfectly normal in every way." Uh, yeah, except he was dead! Paging Dr. Clue!

The "positives" to come out of this wasted time today...

We would be considered high risk if we choose to have another baby. We can take our information to a perinatologist for a consult in that case and he can tell us if there is any further special care we should undertake to make sure the next baby comes out alive. We went to the lab to have blood drawn for a fasting blood sugar level and an A1C (I think that's right), to determine if there is an underlying diabetes problem with me. Ummm...hello...THREE tests...nothing. What ARE we looking for? "Well, they'll most likely come back normal." So if I'm normal...why is my baby dead?!?!?!?!

And I'm not a betting person, but I'm not so sure I'm willing to bet that the mystery gestational diabetes, undetectable by all blood tests known to doctors, wouldn't result in another dead baby. That just doesn't seem like a winning bet to me...for some reason.

Steve wants to wait for the final autopsy report before jumping to conclusions (despite the Dr.'s apparent lack of a problem in doing so himself).

OK...I'll give you until the final autopsy report. But then we're both going to have to admit that it was my fault. It wasn't something I did intentionally, and I did what I was supposed to do...so it's not really MY fault as much as it is my body's fault. This, however, does not make me feel all that much better. I did what I was supposed to do...I DID have the perfect pregnancy...and I got a dead baby.

So what guarantees am I going to get for next time? I'm guessing that all the additional monitoring would catch any problems early and we could discuss options at that point. This thought makes me a bit sick to my stomach too, because it essentially says that had I had better monitoring this time, Alex could have lived.

Quite honestly, I feel like they're telling me, "Thanks for playing, please hit reset and try again." They don't seem to realize this isn't a video game. They don't realize that I can't just gamble on, "sometimes these things just happen." Another dead baby could possibly destroy me mentally. And I personally think we owe it to Alex to find out why he didn't get a chance at his own life.

"I don't know" just doesn't seem adequate for any of it.

And next time...maybe somebody could actually KNOW why I'm at the office? Is that too much to ask?

5 comments:

Holley said...

Cathy, This doesn't mean it was your fault. I know I've said this before, please don't blame yourself just because you need to blame someone or something. And Steve is right, you need to wait until the final autopsy report. What you have now is just based on a visual observation. I think Doctors feel the need to assert an explanation (even if incorrect) just to reassert that they have some working knowledge of the human body.

Really all he had today was an educated guess. I think many doctors feel as powerless as the rest of us in the face of death. They try to project confidence and knowledge to reassure us and themselves that they can find an answer.

Even then, there are no guaranteed answers, but you shouldn't jump to conclusions now. Lucas's autopsy showed a brown spot on his spleen. The coroner told my s-i-l and mom that such spots were not uncommon with SIDS babies but no one had figured out what that means.

Dr. B obviously hadn't prepared for your appointment and hadn't really read the autopsy.

I applaud you for not smacking the doctor and the receptionist. I'm not sure I could have shown such restraint.

Big Hugs.

Love,
Holley

Julie said...

Cathy, I am so sorry your appointment was so horrible. I thought about you all day, and was hoping you would get some answers, just couldn't get here to let you know.

Alex's death is NOT your fault. No matter what the cause, it was his time. No, that doesn't make things better, and no, I doubt you want to hear that, but it's the truth. You did everything right, and still he died. I did everything right, and still Caleb died. It's not the least bit reassuring for a subsequent pregnancy. It's TERRIFYING. What would stop another baby from dying?? The thing is, the NEED,and the WANT to have another baby has to outweigh the fear, and you have to take a huge leap of faith. I just hope that you can get some sort of answers besides "I don't know". You at least deserve THAT much. (((((((Cathy))))))

MB said...

The doctor was grossly underprepared to see you today. That was totally unfair to you and your baby, not to mention unprofessional. What he told you today may not have any bearing whatsoever on the final autopsy report. Holley is right. It's totally visual and could mean absolutely nothing. Please don't jump to conclusions.

Hugs,
M

Julie said...

Cathy, a friend of mine read your blog and wanted you to know that gestational diabetes would have shown up on ultrasound. (she had it with her subsequent baby) She said that even if it didn't show up in those blood tests they should still be able to catch it. I am just so sorry the Dr's office was just so unprepared yesterday. Like that visit wasn't hard enough to go through, they had to add to it. I hope today is a better day.

Julie said...

Cathy, I'm so sorry the doc was unprepared for your visit, and that you didn't get an answer.
An u/s would have shown that Alex was large, but can't diagnose GDM outright, just give suspect to, followed by serial testing. With my first son, he/I was so large by 5 months I also was tested several times, with negative results. He was 9lbs 9 ozs. With Nick, I passed the first test, but the doc tried it again a few months later, and bingo - I had it. Thing is, Nick was small, considered IUGR, and was just 4lb 11 oz when delivered. His size was likely due to the cord problems that was denying him everything he needed. And we didn't know that until delivery.
Even with knowing what killed him, I still am desperate to know why. Why was his cord so long? Why was he so hyperactive? Why did god engineer such a stupid design?
Please stop blaming yourself or your body. I really have no good advice, even though I completely understand, I haven't yet found the magic answer myself. But you can't shoulder the blame, that is unfair to Sam, Steve, and yourself. Even if you never do get a real answer, you just have to believe that it was out of anyone's control. We may never know why. And it is horrible. But we all love you.