March 5th, 2009

Lucy-Scream

Gah!


I wrote a very articulate and scathing post about Georgia's proposed bill on restricting the number of embryos transferred and created in an IVF cycle.

But then I went to copy the post to my clipboard before posting it just in case anything happened to it while posting it and a slip of the keyboard erased the entire post.

Suffice it to say, I was brilliant. And I might re-write the post later, but, um... not now.
kitten hammock

Stressful Week

It’s been a difficult week, but there have been many upsides. 

First, the hospital visit:
The triplets have had a cold for about 10-12 days.  It was nothing more than a runny nose, so I didn’t think much of it.  But over the weekend, Ellie started coughing.  And coughing some more.  And then some more coughing.  That was Saturday.  Then Sunday the coughing got worse and was accompanied by a what I thought might be a little wheezing, but it wasn’t so bad.  And I thought, “Well, if it gets any worse, I’ll take her to the doctor tomorrow.  I’m sure she’s fine.”  Sunday evening, I put her to bed and she woke up within an hour coughing and crying, completely miserable.  She was definitely wheezing.  I paged the doctor on call (the doctor I don’t love), and told her what was going on and she said, “Well, there’s not a lot you can do for coughing other than steam treatments.  She might have an ear infection also, so you can try giving her Tylenol or ibuprofen and see if that helps.  Call me if it gets worse.”  But my baby!  My baby was wheezing.  I called my friend who’s a pediatrician down the block and told her what was going on.  She said she could listen to her, but if she was wheezing and really laboring to breathe, she needed to go to the emergency room.  Within an hour of having talked to my doctor-on-call, it was clear that my baby really couldn’t breathe.  So I called my doctor back, told her I was taking her to the ER, and left. 

We were seen immediately, and they immediately checked her pulseox, gave her steroids, albuterol via nebulizer, got a chest x-ray, gave her a thorough work up.  The first albuterol treatment helped a little, then she regressed.  The second albuterol treatment didn’t help at all.  The chest x-ray was pure misery.  They put my baby girl in this horrible medieval torture device that she hated and she raged against.  The x-ray technician thought she was going to break it, her rage made her so strong.  I secretly thanked heaven for her strength.  Strength and rage was better than lethargy.    Secretly, I didn’t blame her for raging against that contraption.  I would have, too.  The x-ray was consistent with an upper respiratory infection, but showed no signs of pneumonia.  She continued to wheeze, gasp for air, her pulseox continued to drop, so the ER doctor decided to admit her.

My poor baby.  My Eliana. 

Eliana means “Please, My God” (as in a prayer) or “My God has answered”  (we actually spell it the second way).  Though I was certain she would be fine, I was obviously praying for her to be fine.  My prayers were answered and she was released Monday evening.  Not without a little drama which I won’t relay here in the interests of time. 

She’s still on prednisone (almost done with that) and albuterol (every four hours until we decide she doesn’t need it).  And she’s been diagnosed with Reactive Airway Disease, and possibly asthma.  She’ll likely need nebulizer (albuterol) treatments every time she gets any sort of cough/upper respiratory virus for the long term.  But at least now we know what’s going on.  The virus she got this time could have been anything, just a cold, RSV, whatever.  They don’t know.  But for sure, the other triplets have it, too, but not to worry – to them, it shouldn’t be anything more than a bad cold/upper respiratory infection. 

Why Tuesday Sucked Mightily
After having gone 45 hours without sleep, I slept nearly 8 hours Monday night, which was miraculous.  Tuesday was a rush of activity – taking Ellie to the doctor, trying to squeeze in some work, etc.  Took J-man to speech therapy and on the way… *WHAM*  I was rear-ended.  No damage to my car, but my head started pounding immediately and my neck was really stiff.  Still, no harm, no foul.  Second time I’ve been rear-ended on my way to Speech Therapy in six weeks.  Sigh.

Speech therapist was running 10 minutes behind, fortunately, not a big deal, but I was tired, I didn’t want to be running behind tonight of all nights.  Sigh.  On the way out of the office, I called Seth to see what his status was – it was nearly six o’clock… he should have been halfway home.  He didn’t answer his cell phone, so I paged him.  And he called me back.  From his office number.

“What on earth are you still doing in Baltimore??”
“Well, if you’ll give me a chance, I’ll tell you what happened.”

His car wouldn’t start.  And someone in the garage tried to jumpstart the battery, but no dice.  Le Sigh.  Fortunately, it was a Tuesday.  We have a babysitter on Tuesdays.  So I got the J-man home, got Ellie her nebulizer treatment and her prednisone, got the babies to bed, got the J-man his dinner, packed up my things, and headed to Baltimore to rescue my husband, who meanwhile had called Roadside Assist to tow his car (they wouldn’t tow all the way back home, but would tow somewhere close to his work to someplace that would replace the battery the next day… he just needed me to pick him up so that he could get home for the night). 

Half-way to Baltimore, he called and said, “A miracle happened – Roadside Assist was able to get my car started.” 

Needless to say, I still made the man take me to dinner.

Wednesday Doesn’t Get Much Better
I woke up Wednesday feeling like I had been hit by a truck.  Worse, Abby woke up sounding like she’d been hit by a truck.  Poor baby.  She was wheezing, coughing, struggling for air.  I made a mid-afternoon appointment for her with the pediatrician. 

And by mid-afternoon?  She was fine.  That’s what tends to happen with these things, by the way.  Worst at night and first thing in the morning.  Clear up during the day.  Le Sigh.

By evening, Abby was just awful.  She was wheezing, gasping for air, coughing.  She couldn’t sleep.  She screamed so much, she went hoarse by the next morning.  She was miserable.  Finally, we paged the doctor and gave her a nebulizer treatment which seemed to help.

Now I wonder if I have two babies with reactive airway disease.  It’s certainly not outside the realm of possibility, since they were both premature babies, and premature babies are obviously predisposed to respiratory issues, though as premature babies go, they were very healthy and escaped most of the respiratory issues that many premature babies have, since they were triplets (premature HOMs, especially ones born as late as mine were, tend to  have more mature lungs than premature singletons because they get more respiratory stimulation in utero than singletons do). 

Which Brings Us to Today
Everyone is recovering, including Mommy.  It’s just been a rough week.  I just wish there were more hours to sleep.  I keep saying maybe tomorrow, but then the other shoe drops.  Gosh, I have a lot of shoes. 

The Good News:

  • Currently, none of my children are in the hospital, and they are all on the mend.
     
  • My husband’s car has been repaired.  We had a lovely dinner in Baltimore.
     
  • My car sustained no damage in the minor accident I had.  J-man was also unharmed.
     
  • J-man made it to Speech Therapy on Tuesday and had a successful (if bouncy) session.
     
  • I’m married to a delightful, wonderful man who takes care of me when I’m at my wits’ end.
     
  • I have so many supportive and wonderful friends, and such wonderful family. 
     
  • I am very blessed.

Family May 2012

About that Bill...

Ahem.   Now that I'm over my little hissy fit from last night.  And, um, this morning.  And, um, this afternoon...  Have I calmed down over the proposed Georgia legislation?  In a word?  Not so much.  It turns out, I'm a wee bit, shall we say, opinionated.
 
Let's review this proposed legislation, shall we?  In plain English, the Georgia so-called "Ethical Treatment of Human Embryos Act" (the title makes me want to vomit a little, how about you?) seeks to do the following:
 
1.  Limit the number of embryos transferred in an IVF cycle to 2, if under 40 (3 if 40 or over). 
2.  Limit the number of eggs fertilized (and therefore the number of embryos created) per IVF cycle to the number of embryos the woman is planning to transfer.  (e.g. no more than 2 in a woman under 40, 3 in a woman 40 or over).    If more eggs than that were retrieved in a cycle, those additional eggs could not be fertilized.
3.  If extra embryos are created, they may not be cryopreserved or destroyed; they must be transferred.  (In other words, if 2 are created, a woman may not opt to transfer a single embryo and cryopreserve the remaining embryo, she must transfer both of the the embryos to her uterus).
4.  The bill also bans all financial compensation for donor gametes (sperm, eggs, embryos). This would seriously limit the donor pool in Georgia.  It may, in fact, eliminate it entirely.
 
Note, of course, that the bill does not propose any financial relief or mandated insurance coverage (Georgia does not currently have an insurance mandate either) to help with the added financial burden of using less effective treatment. Patients will still have to pay out of pocket for less effective treatment.  
 
Here's the first thing, and let's get this out of the way right off the bat:  I am never going to support legislation that attempts to regulate what I believe needs to remain a discretionary decision between a doctor and a patient.  Should, under most circumstances, 2 embryos transferred in an IVF cycle be an appropriate course of action?   Absolutely.  Do most doctors today follow that guideline?  Statistics are showing that, yes, doctors are trending that direction quickly.  But are there ever circumstances of patient history, embryo quality, etc. that might suggest a different course of action may be appropriate?  Certainly.  And that's when legislation like this is inappropriate.    Think about it:  If a legislator can dictate how a doctor practices his/her field in infertility then there is no telling what may happen down the line with other specialties.  Would you want a politician telling your cardiologist when it's appropriate to do a cardiac catheterization?  Or when your neurologist can prescribe beta blockers?  Maybe only on alternate Thursdays?
 
So now that we've got out of the way that I have a blanket opposition to any sort of legislation like this, let's move on, shall we?
 
Let's think about the provisions a little more.
 
Limiting the number of embryos transferred.  Sure it seems sensible.  Gosh, I sure don't want to continue this epidemic of octomoms and HOMs, do you?  I mean, do you remember all those sextuplets that were all born a couple years ago?  Oh.   RIGHT!  Those were all from IUI!  That's RIGHT!  Octomom just happens to be the first case of octuplets born as the result of IVF well... ever.  And sextuplets?  Right, also generally not IVF.  In fact, most cases of quads and triplets even are the result, not of IVF, but of IUI.  Even twin statistics in IVF are going down because with the increasing popularity and success rates with eSET when used in an appropriate patient population, you can reduce your twin risk from upwards of 40% down to as low as 1%, without lowering your overall success rate.  So this epidemic of HOMs that the great state of Georgia is so concerned about happening in their state?  What was it Ralph T. Hudgens said?  "Nadya Suleman is going to cost the state of California millions of dollars over the years; the taxpayers are going to have to fund the 14 children she has ... I don't want that to happen in Georgia."  Oh because Nadya Suleman's pregnacy was, what?  Contagious?  Um.  No. 
 
In fact, limiting the number of embryos transferred in an IVF cycle may seem quite sensible.  And, in fact, the ASRM and SART do have guidelines that recommend doing exactly that.  They have, over the years, been dramatically lowering the number of embryos they recommend transferring in an IVF cycle and are recommending eSET with increasing frequency these days.  While they are guidelines, the statistics do show that by and large, doctors in the industry are following them.  And doctors who are found to be consistently in violation of these guidelines can have their SART membership revoked.  Think that's not such a big deal?  Well, think again, because many insurance companies will only cover doctors who are members in good standing with SART.  So legislation?  Just not necessary, and, honestly?  Quite possibly harmful because it takes away the discretionary ability of the doctor for the case-by-case determination of a patient's needs.
 
Now what about this fertilization/embryo creation business?  I'm sorry, but this is utter crap.  The bill proposes limiting doctors/embryology labs to only fertilizing up to 2 eggs per IVF cycle for women under 40 (3 for women 40 or over).  The politicians/Right to Lifers who wrote this bill clearly have no grasp of the medical science at play here.  There is generally an attrition rate on embryos and it can be as high as 50-75%.  What do you do then?  It's too late now to make another, so now you're stuck.
 
So I'll give you a personal example.  In my last IVF cycle, I had 10 eggs retrieved, 9 were mature and miraculous, all fertilized and were 2 celled embryos the next day.  By Day 3 I had 7 crappy looking Embryos.  On Day 5, I had 4 "meh" looking morulas.  On Day 6 (transfer day), I had 2 decent looking blastocysts.  I transferred one. The other didn't make it to freeze (and neither did the other ones that had been lagging behind).  My cycle failed.  The Georgia politicians who were so worried that if I fertilized all 9 of my mature eggs I'd end up with 8 little human beings (and make no mistake, the language of the bill makes it clear that they believe that my embryos are living human beings) on ice indefinitely after I transferred my one blastocyst on day 6?  Needn't have worried.  Nothing made it to freeze.   If I'd only fertilized 2 eggs in the first place?  I may never have even made it to transfer, but I would have probably blown about $10K for nothing. 
 
Note, the bill provides for no additional financial relief, such as insurance coverage to help with the added financial burden of using less effective treatment. 
 
Further, note that if I made two embryos in the hypothetical scenario, and miraculously, both survived until transfer day - I would have to transfer both embryos to my uterus.  I would not be allowed to destroy it, per the language in the bill (actually, it's so poorly written, that there's a loophole there, but the INTENT of the bill is to keep people from destroying embryos, so let's go with that for the sake of argument, for the moment).  Nor would I be allowed to cryopreserve the embryo.  So me, who cannot under any circumstances risk having another multiple pregnancy, would have to transfer two embryos because of the way this law is written.  OR I would have to simply have fertilized only one egg in the first place, again risking that my one embryo ever made it to transfer. 
 
And banning all compensation for donor gametes?  That's just tacky.
 
What I hadn't realized was that there was a second bill being considered this morning.  SB 204/HB388 is an embryo adoption bill. It would subject embryo donation to all the same provisions as required by law for adoption of a child. This would subject infertility patients needing an embryo donation to go through the judicial proceedings, home visits, and other procedures required for an adoption.   Do you really think this is appropriate?  Is this really what you want? 
 
But back to SB169.... there's a lot of disturbing language in the bill:  In disputes arising between any parties regarding the in vitro human embryo, the judicial standard for resolving such disputes shall be the best interest of the in vitro human embryoYeah, what?  That's a custody standard used for custody disputes involving children.  How exactly is the judicial body going to apply that standard to an embryo?
 
Another example of disturbing language:  Nothing in this article shall be construed to affect conduct relating to abortion as provided in Chapter 12 of Title 16; provided, however, that nothing in this article shall be construed or implied to recognize any independent right to abortion under the laws of this state.  To hell if this isn't a reflection on abortion stance.  And this bill was written, in part, by the Georgia Right to Life Campaign.  You think that this wasn't written as a right to life issue?  WHATEVER.
 
More disturbing (emphasis mine):  A living in vitro human embryo is a biological human being who is not the property of any person or entity. The fertility physician and the medical facility that employs the physician owe a high duty of care to the living in vitro human embryo. Any contractual provision identifying the living in vitro embryo as the property of any party shall be null and void. The in vitro human embryo shall not be intentionally destroyed for any purpose by any person or entity or through the actions of such person or entity.
 
I'll let you figure out why that one bothers me.
 
 
Let's be clear.... either the politicians who drafted this law understand NOTHING about the medical science behind IVF and how it works and didn't care enough to consult a single doctor or embryologist while drafting this bill.  OR, alternatively, they DO understand the science, and they seek, instead, simply to eliminate IVF from Georgia entirely.  And in doing so, they'll shut down a $50million dollar (give or take) industry in Georgia and they don't care that they're doing so.
 
I don't want another set of HOMs.  I'd like to see fewer HOMs resulting from fertility treatment.  Truthfully, I think this piece of legislation could potentially INCREASE the number of HOMs because it will make IVF so difficult to effectively obtain in Georgia that people will instead turn to IUI with injectible gonadotropins.  And guess what happens then? 
 
So...  have I calmed down over this proposed piece of crap?  Not so much.  But I'm quite glad that it was sent to subcommittee for "further research."