Resolution

It came down to how one defines "lethal".

Did the genetics counselor believe the fetus would live to be delivered? No.

Would the genetics counselor be willing to put a number to that belief? Yes.

And that number would be? 99% chance of fetal demise occurring before term.

So the genetic defect could be described as lethal? Technically, yes. But, specifically, no.

To provide a subtext I should tell you that my magnificent OB contacted a local, non-network hospital (my own network is Catholic, who knew?) last Friday and that hospital agreed, provisionally, to accommodate us in a termination. The provisos, per their policy, were:

1. They needed a letter from a perinatologist asserting that the genetic defect was lethal.

2. They needed a letter from a neonatologist concurring with the perinatalogist's belief that the defect was, indeed, lethal.

3. They needed their vice president for medical affairs to read these letters and agree that the defect was, ahem, lethal.

Based upon this list of requirements I left a message for the genetics counselor we had seen before CVS, explaining that my doctor was willing to work with me and that we had found a hospital (actually one of the two hospitals the perinatology practice, and therefore the genetics counselor, works from) but we needed these three things... could she help me? This was Monday morning. Monday afternoon she called me back and said she had faxed a letter to the hospital and spoken to the coordinator there. I thanked her. Then nothing happened. On Wednesday morning I called the hospital coordinator and asked if she needed anything else from me. She said that they were still waiting on a letter from a neonatologist and my OB's office was working on it. My OB, in the meantime, called me for the name of the genetics counselor to enlist her help in getting a neonatologist to consult with them. So I gave her the name of the counselor and waited some more.

Late that afternoon I learned that the genetics counselor was, in fact, unable to assist in getting a neonatologist to concur with her assessment that the defect was lethal. Because, in point of fact, she had not said it was. Her letter to the hospital stated that our pregnancy history suggested the prognosis was poor and IF the fetus reached term it would have very serious problems but no, she could not say that it was absolutely, positively, no-chance-at-all, deadly. It was only mostly lethal.

Which lead us to the conversation above and my seething frustration with what I felt to be her duplicity and cowardice. Rather than slapping her metaphoric balls on the table on Monday and saying "Julia, this hospital needs a 100% lethal problem, like anaencephaly, and your genetic problem is just not well enough known for us to make that assessment. The best we can do is 99.9% but that will not work for them", she funked it. She agreed in theory but in practice sent a letter that she knew would be rejected by the hospital and only confessed to this when she was put in the awkward position of being asked to facilitate a second letter.

She then had the unmitigated gall to call and tell me that she felt I was making this more stressful for myself than it needed to be by seeking a hospital termination. She privately told my OB that if I felt so strongly about avoiding an abortion clinic I should go to Kansas City. Kansas City! The cause of and solution to all life's problems.... the ribs, I hear, are excellent, but, really, lady, bite me.

So, as you can probably tell, I am irked. I am irked that the universal reaction to my request to have my own doctor perform a therapeutic termination was one of confusion and surprise, and that DAYS went by before we were told that this was impossible. I am irked that I was never able to speak to an actual perinatologist, and that this perinatology practice does a thriving trade in CVS, amnio and level II scans without a single mechanism in place for helping patients deal with the worst possible results. Mostly I am irked that I really wanted this baby and it could not survive but to whom do I direct my anger for this? Right. Exactly. So back to the Process.

Once my OB realized that the perinatology practice was not going to provide anything useful she quickly scheduled me with a private abortion clinic and Steve and I went yesterday afternoon.

I could write a book about this but the important part is: the required ultrasound showed the fetus measuring only 11 weeks and further investigation revealed that it had died about a week ago.

Huh.

I went ahead and had a D&C there at the clinic although I was now obviously able to go to a hospital after all. Any hospital. Vatican City General, should I have so chosen. But instead I responded to exhaustion, shock, anger, laziness, worry about finding a babysitter again, and a burning desire to just be done with it. And it wasn't terrible. It wasn't great, either, don't get me wrong. I opted for sedation and it hurt. I took a smuggled Vicodin on the way home and it still hurt. People were very nice but before we learned that there was no longer a heartbeat I did have to sit through the state-mandated lecture on how Steve would have to provide financially for the baby, should I choose to have it, no matter what. Actually, this part was rather sweet, as the doctor delivering the speech was kind enough to insert editorial comments like "you could choose to continue the pregnancy and have the baby, although you cannot, of course, because the fetus, look at those chromosomes! one! four! because the baby will never be born because it has lethal problems, this is so stupid, but you could, according to the state. although you can't. stupid stupid stupid."

That was my week.

I sincerely hope yours was better. 

Comments

[Kim]

I am so sorry for what you are going through and the lack of compassion and professionalism you received before getting help at a private clinic.

My thoughts and prayers are with all of you.

[leslie]

The mind boggles. You sure didn't need to have go through all that garbage on top of such a miserable situation. I am truly sorry - and outraged. No one should have to jump through all those pointless, intrusive hoops. I admire your courage immensely. That counselor should be ashamed of herself. Such a mealy-mouthed way of weaseling out of actually being helpful.

Not that vicodin will help with pink-eye either....

[uberimma]

Oh, God. What a week. What a country. Why the (*#%*#@ can't you do what you need to do without having other people's religious beliefs add even more pain and suffering to your life? Why make laws that do things like this to people who have, if I may be so bold, already been through enough? And why, as you say, provide all the testing if they can't deal with helping you through the bad parts?

I'm so sorry this happened to you.

[Fellow Twin Citian]

I'm so sorry, for everything.

FWIW, the Star Tribune ran an article earlier this week on proposed legislation that would remove the state-mandated lecures for situations like yours.

[Menita]

I hate that woman. How awful, how cruel, what little compassion.
I did love your other doctor, the editorializing one.
And I am so sorry about all of it.

[Bev]

This is absolutely ridiculous!!! yah, abortion is legal in the US of A! Anyone who has ever had to have an abortion at a clinic would know why you wanted your doctor to perform it! What a bunch of crapola! And THIS is what ticks me off about Catholic hospitals. We have one in our network too. Don't even get me started about what they put me through when I was miscarrying. Funny thing is that a hospital 40 minutes away named 'Christ' will perform abortions, but not the 'community' hospital. Women need to know this about the Catholic-run hospitals. Thank you for telling your story. (I have been reading you since your iparenting days, and just love how you write!) I'm so sorry you had to go through any of this!!!

[PBfish]

Jesus Christ. I am completely disgusted by what has happened to you on top of the horror that you are already dealing with. I am so sorry that this happened.

[concertina]

Sitting in Texas shaking with rage. What a cowardly, awful woman.

[victoria]

I hurt for you.

[g]

Delurking to say that I'm speechless about what you've had to go through. I'm also very, very sorry.

[Sally]

Good for you you feisty dragon lady. I'm glad you fought to have a hospital termination (regardless of how it turned out) as it can be so sucky to file solemnly past protesters and picketors, only to sit for four hours in the middle of a room full of about-to-not-be-pregnant teens giggling about how they hope Vinnie learns to pull out next time...
OK that's crude and it doesn't sound as pro-choice as I am, especially since "Vinnie" used to be MY boyfriend, but I'm just sayin'.
Peace and Wine to you my dear.

[Meg]

This is absolutely what happened to my friend. It broke her heart. I am so sorry, Julia.

[Sylvie]

I have often wondered in this odd country of endless debate about abortion, what actually happens when the doctors give you the awful news. The tests are very available, but the what ifs about the tests seem not to get discussed. Why offer the test if you just cross fingers and hope it only gives good news because the worst news can't be handled? I'm sorry that all this had to happen to you. And impressed that you seem so strong. The American healthcare system is screwed up so many, many ways. It just makes me want to scream. Or move to Mexico, which is what I have done.

[Coralie]

Oh, the horror.

I am so sorry for all of this- it is all just unbelievably cruel.

I will be drinking a glass of wine in honor of your courage tonight. I hope you will too.

[Amy]

I'm so pissed off for you and for any other woman who has to go through this bullshit. Thank god for abortion clinics. As much as I know that is not what you wanted, not what was best for you given the circumstances...thank god they are there you know. Thank god there are pople out there to take care of the things that the rest of our health care system is too chicken shit to deal with.

I'm so sorry. About all of it. That you couldn't get the care you needed and deserved, that you needed that care to begin with. It is all so terribly unfair. I hope your body and heart heal soon.

[Meg]

That blows. And blows my mind. I just can't understand how doctors can offer you tests and then be left floundering on how to help you when the tests show something is wrong. I'm so sorry.

[Tracy]

I am so sorry that you had to go through this. I am also sorry that the Dr was such a coward. I wish you comfort and peace!

[Chris]

I'm sorry for your pain, both emotional and physical.

[Jenn]

What fucking morons. I'm so sorry you had to go through that nonsense on top of what you already had to deal with. *hugs*

[Lori]

I'm so sorry. The messed up chromosomes, the process you had to go through, the genetics counselor, the fact that you had to take a smuggled Vicodin, and then finding out the fetus had died afterall...it's just more than a person should have to bear.

[Jessica]

I just can't imagine.

My week was undeniably better than yours. I'd share it if I could. Thank you for continuing to tell your stories. I'm thinking the warmest thoughts on your family's behalf. I hope with all my heart that next week is a better one for you.

[Aria]

:hugs: and chocolate from us.

[kit]

I am white with fury that you had to endure this after learning your CVS results. I wish you peace and a swift healing -- as well as a better healthcare system that doesn't allow you suffer in such a way. I also pray that this is the absolute last time you are pregnant without a happy conclusion. You deserve so much more!

[Holly]

I am sorry you had to go through any of this yet again. My heart hurts for you, genuinely. And the weird thing is, I don't even know you. Not really, anyway.

May you find peace again and at least have barrels of wine at your disposal along with boxes of the finest chocolates.

Still praying,
Holly

[cranky mama]

I am aghast. Because having to fight for termination was *just* what you needed after finding out that the pregnancy wasn't viable. Gaaaaah.

[Jessica]

I like that last doctor with the editorials in the speech, and I like you. I don't like anyone else in your story (bunch of stupid asshats masquerading as medical professionals), and I'm very very sorry you had to go through this. Thinking of you.

[Kel]

I'm so sorry for all of this.

That you spent the week trapped in this midevil medical nightmare. For. Nothing.

That this pregnancy wasn't Patrick's sibling.

Once again, thanks for writing it down, its going to help so many.

Kel

[nate]

Bastards.
I'm crying for you right now. Don't know why, but the fact that the fetus died a week ago just got me. I think it's b/c the rest of it made me so damned ANGRY, and when I read that, the tears started.

I'm so sorry (again) that this happened to you. Just one piece of b.s. on top of another. My heart just aches for you, Julia. But I'm glad this part of it is over, and you can start to heal. And I'm glad that Steve was there for you and with you.

And remember, if you're ever in Madison...

[krimojo]

I'm so sorry. This is one reason why I have a problem with putting stricter guidelines on abortion - because it makes it so much more painful for people in your position to go through. Yeah, you can get one, but you have to jump through all these hoops, and that's just wrong when your heart is already hurting.

I hope somehow that genetic counselor finds out it WAS 100% lethal. Maybe she'll have more balls next time.

[Paula]

I'm just so sorry for you and your family.

[pk]

that is vile. barbaric stupid system. i do like the doctor interjecting in the lecture, but gah what an idiotic pointless oh i'll just shut up now.

(and apols to your OB place for calling them wankers yesterday when they are the only ones who aren't a bunch of tossers)

[DD]

That G.C. totally pussed out on you, which I'm sure you muttered under your breath more than once or twice. I am so sorry this happened to you, and then to find out your baby had died shortly after the prognosis must be nothing but a plate of bitter irony.

Again, I'm sorry for so much suckage.

[Sandy]

first thing that crossed my mind was, "what the f*ckin f*ck?!" Why would they make you go through all this? It sucks ass...sorry to be so crass about it all...but I'm angry and upset on your behalf...

Wishing you nothing but peace....

[Gina]

I am so sorry about all of this. Sorry you lost the baby and sorry you had to go thru all of that for a very wanted baby.

I am heartbroken for you and a bit angry for you for all that extra crap and stress.

Again, I am so sorry this did not work out. I really wanted it to work out for you.

[arubagirl]

Jesus, that must have been horrible.

And the GC was a bitch first class.

[Karen]

I'm so sorry you had to go through such a stupid, pointless process at such a difficult time. That genetics counselor ought to be ashamed of herself for doing her job so poorly and then having the gall to suggest that you were the one making things difficult! Gah, it burns me up.

[meredith]

What a freaking nightmare. I just cannot believe that hospitals are not more prepared for situations like this. Yes, they are rare, but not unheard of! It is completely unacceptable to put you through that. I'm so relieved for you that it's over. I would've done the exact same thing had I been at that clinic. I hope you're resting up & having that good howl that you need. I'm so sorry for such a hellacious week. :(

[Crystal]

I'm so sorry. I hope that you will find peace about this loss very soon. I know it's not easy, and I really wish I could do something to help you! There are so many of us out here on the internet that only wish the best for you. Hopefully that brings some measure of comfort. And you have permission to eat lots of chocolate, too!

[Leslie]

ohmigod ohmigod ohmigod ohmigod.
I can't even wrap my mind around this ridiculous catch 22. "Take this test. If the results are 'bad' well at least you know?" What is THAT shit? I don't get it. I feel anguish for you having to make the calls and basically beg for medical mercy. You are a beacon of light and hope. I can't wrap my mind around that either. I'd be shopping for a weapon...

Peace to you and yours. I send waves of love in your direction.

[Sophie]

I am so sorry. I hope you can continue to inspire so many people with your strength.

[Vix]

I hate moral cowardice of the type shown by your GC, it's inhumane if not inhuman. I'm so sorry you had to go through all of this - a week of truly awful proportions - quite a number of us here are thinking of you and hoping it infinitessimally helps

[terri c]

Ah, Julia, you have such class and courage. I admire that even as I am furious that it was necessary. Your GC is an eedjit.

[Susy]

Oh what a fucking nightmare. I've got about a million and a half metaphors that I'd like to use right now, but my brain won't let me settle down enough to focus. Before I got to the end of your post, I was going to suggest that you all fly out to California and come stay with MY Steve, my daughter (Patrick's female counterpart) and me and have your procedure at Stanford (where they would treat you like you deserve to be treated and not jack you around), but thankfully one of your so-called medical people finally yanked the stethascope out of his ass long enough to use it properly.

Ugh. My heart goes out to all of you!

[Rhonda]

Gaaah! My heart goes out to you and your family. I'm so sorry that you had to go throught that, and so glad that you OB was finally able to get you this godawful maze.

You are in my thoughts. I wish you peace, healing, and really good chocolate.

[Rhonda]

er... "youR OB." I'm so incensed by what you had to go through that I can't type properly.

[EJW]

Julia, I'm so sorry for your loss.

I'm also horrified by your treatment by the medical community. Are we really so simple-minded that we can't differentiate between a woman (legally) choosing to terminate her pregnancy and a couple making the most horrible decision of their lives, despite hopes and wishes for the opposite result? Your doctors should be ashamed of themselves and Americans should be ashamed that we've allowed the Religious Right to infiltrate our doctor's offices.

[Jessica]

I am continually horrified that religion and healthcare cohabit in our country.
I am sorry that everything was so horrible. That woman should not be a genetics counselor. Your OB on the other hand sounds great.

My heart goes out to you and your sweet son and husband.

[Jane]

I've read your blog for some time but never commented before. As the mother of a preschooler and also someone who has suffered two miscarriages in the last year, I just wanted to tell you how your eloquence in the face of such heartbreak has touched me and doubtless many others. You are a remarkable person to be able to write so beautifully despite your sorrow. I'm very sorry for all you've been through and I sincerely hope you (and I) will each be mothers again this time next year.

[Denise]

I am so sorry, and so angry, and not particularly surprised, but sad nonetheless that you had to go through this.

[Ella]

It makes me both sad and angry that you had to go through this, Julia. What a nightmare.