(Samantha, I promise I will follow up on my “tagging” soon; I just have a few things to get off my chest first!)
A few days ago we received the “Final Autopsy Report” for Zach in the mail. I knew it was coming; the genetic counselor called me last week and asked if I wanted the report mailed to me. I just wasn’t exactly expecting it to be so…thorough.
That report had every last detail about our son that I could ever hope to know. The size and weight of every organ was duly noted and recorded. The health of every part of his body was assessed, too.
That was the hard part. All 46 chromosomes—check. Healthy lungs—check. Healthy heart—check. Normal facial features—check. By all appearances, we had an absolutely perfect little boy growing inside me.
Except.
You had to read through the whole report to get the real story. His kidneys were, indeed, completely absent. His bladder was “rudimentary,” meaning, I suppose, that it was there but not in the shape it was supposed to be in. There were no ureters and he had no a.nus.
Such small things to be wrong in such a small boy. Negligible, really. But, of course, no matter how perfect a baby’s anatomy is, he can never live without kidneys. It doesn’t seem quite fair.
The other part of the report that got me was the description of most of his anatomy as “unremarkable.” Of course, I know that in medical-ese, that just means that there wasn’t anything unique enough to note. Someday, I hope to give birth to a baby that has “unremarkable” organs in every part of his body. But still—my son was anything but unremarkable! (Even now, indignant tears are running down my face as I type this. I guess a mother’s fierce pride never dies—not even when her son does.)
The most important “take-home message” from the report is that the doctors think Zach’s problems were a complete anomaly. Apparently, sometimes bilateral renal agenesis can be caused by chromosomal problems but that wasn’t the case here. This is very, very good news. As far as modern medicine is concerned, I have no more chance of having another baby with the same problems than anyone else.
Of course, I’ll still be frantically looking for kidneys if this pregnancy progresses enough for me to see the inside of an ultrasound room again. How can I not?
14 comments:
Anne:
When my son's death certificate arrived last month, I was struck and wounded by the line: Martial Status: Not Married. Obviously my son wasn't married, he was half an hour old when he died. But, it seemed to me the whole sum of all the things he wouldn't ever do were wrapped up in that line.
I admire you for looking at the report. I would have likely thrown it in a drawer or made my husband read it. Good for you for facing it, and I hope it brought you comfort with this new pregnancy.
cw
Ann, Your son was remarkable. He touched your life and he was so important. He was your little boy. I am sorry that you had to see on the report that everything else was unremarkable. A word like that can be so hurtful even though like you said it is just mecialese. I hope that report gives you renewed spirit in that you made the right decision for Zach and for you. I'm sure it was difficult but you did everything you could do. Hugs to you for being brave enough to face it at this time.
It was a brave thing for you to read that report, but mothers are brave beings by nature! Well done.
I hope you got my email...the original address you gave me bounced back, but then I realize there was no @ in it, so I jigged it around. If it didn't reach you, you can send me an email at bkildee at eircom dot net and then I'll resend my email to you. (Whew, that was a lot of explainin'.)
I hope if nothing else the report gives you a little hope that you won't have to face this again. I couldn't imagine even being able to read the report. It shows that you are a very strong woman. I wish you all the best!
So glad to know the report did not point to any chromosomal issues. That would have only added to your fears with the current pregnancy.
I am so proud of you for being strong enough to read it. Just another way in which you did what you needed to do for Zach - even though it was hard.
I'm sorry that the medical terms are so unfriendly. I know it make it hard for you. In our pathology report from the ectopic we had in March '07 they referred to our twins as "products of conception". I cried and cried at the idea that my children, my hopes for the future, were reduced to this terrible term. I know it is different, for sure, but in some ways the indignation and pain is the same.
Reading that report must have been terribly hard. I hope it helps allay some of your fears about this current pregnancy...
It must've been so bittersweet to read such a sad document, but get the relief of knowing you don't have an elevated risk of repeating this tragic experience. Hugs to you, my dear.
Zach was anything but unremarkable. He was YOUR little boy.
I'm glad that the report suggests that you don't have to have extra worries about this pregnancy. I do hope that they can find those kidneys for you nice and early!
Ann, that must have been hard to read, but I am glad there was some good news mixed with the sadness of reading your son's autopsy.
xx
J
Wow. What a difficult and surreal experience that had to be. I have often wondered if I would really want to know exactly why my two pregnancies failed. Having it all spelled out like that would have to be rough.
At least it seems unlikely to happen again, as small of a comfort as that might seem so soon after your loss.
Cheryl's comment was pretty poignant too.
Always remember your entire remarkable son.
Ann, as always, I am sending you lots of love. I think of you and your remarkable son often.
What courage it must have teken to read through the report. It's not something that you should ever have to do again.
I remember being really annoyed by how short Owen's autopsy report was. I wanted so much more- i wanted answers. I know now there are none that would have satisfied me.
I have to agree with other commentors--the organs may have been unremarkable, but the boy himself was quite a remarkable kid, able to touch so many people's hearts in such a short period of time.
The only thing I can think of is that people are so much more than the sum of their parts. That's what makes your son special. The miracle is that a cluster of "unremarkable" parts becomes such an extraordinary miracle.
I hope some of your worries about this current pg were put at ease because there doesn't seem to be a worry about a chromosomal problem.
I think you are a remarkable person.
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