Friday, November 13, 2009

The Good and the Worrisome

I have blog awards to get to, and I have been remiss in responding to my kind and generous blog sisters who have bestowed such awards upon me. I meant to catch up on them today, but something has come up....

First the good. I had a huge success at work. I drafted a fairly important motion. The judge issued his tentative ruling yesterday - in our favor! Everyone at work (including the bosses) was congratulating me. Not that I want or like accolades, but since I am planning to take maternity leave next year, it's good to prove my value now.

Now for the worrisome.

On October 30 I had my 20 week anatomy ultrasound. During the u/s the tech basically said everything was fine. She left the room when it was done to consult with the doctor. Again she said all was okay, and that was that.

But something has been bothering me.

This morning I had a regular OB appointment. I asked if they received a copy of the 20 week u/s report from the perinatologist's office. The nurse practitioner brought the report up on the computer screen, turned the screen toward me, and we read it together.

I knew that the u/s tech measured my baby's femur (the thigh bone) over and over and over. And she did an additional skull measurement just before finishing up too. She didn't say anything, but the repeated measurements has been nagging at me.

The report said that the femur measurement was "short for age" and "is probably a normal variant, but is a soft indicator for Down's Syndrome."

And nobody was going to tell me?!

Okay, this is precisely what pisses me off. You go for testing, but unless you specifically ask, they don't bother to give you the information, the implications, the likelihoods, the options, etc.

The nurse practitioner said it's probably nothing. I told her our egg donor is 5'8" tall and our sperm donor is 6" -- we expected a long and tall baby. The fact that his measurement is in fact short for age.....well.....WTF does this mean????

She took the report to one of the docs in the office. She came back with, "Although the donors are both tall, it could be a recessive gene for shortness. It doesn't necessarily mean anything."

How's that for an answer?

I requested, and they approved, another u/s to re-measure. They will send me to a different perinatologist so that we get a second opinion. Hopefully they will be able to get me in sometime during the upcoming week.

I don't want an amnio. I don't even know that we will do anything (or that there is anything we can do) at all. I just want to know the facts. I want the information. I want to know what it means. Will our boy reach an adult height of 4 feet tall? Will one leg be shorter than the other? Was the measurement wrong? Is the measurement truly within normal limits? Has the growth now caught up? What does it mean?

Once again this is a lesson that we have to be extremely proactive in asking questions, probing things that don't quite seem right, demanding full disclosure.

The baby's heart rate was fine, he is kicking, my weight gain is fine and all other signs are good. I am thankful.

My DH feels confident that everything will be okay. I sure hope so.
...

15 comments:

Kara's Mom said...

I'm sorry you're going through this. I don't know what's up with the medical community, but this is the very reason you get a Nuchal. My first and only pregnancy was through IVF 2 years ago. PDG testing on the embryo told us it was a boy. The ultrasound 4 months later told us it was a girl. They told us she would be a female XY. After repeated calls by me to the PGD lab, they re-examined the cell and told me it was indeed an XY. I was freaked out for no reason. In the end, tragically, my baby died in the womb at 38 weeks, so I got to think about that damned chromosome scare and thought "Who cares if she was an XY Female?? At least she would be alive."
I hope you get some conclusive answers soon. much love.

Lorraine said...

I would immediately worry about every possible implication, too. And I would also not necessarily DO anything, so I totally know where you are with this - just needing information so you can figure out how to think about what it might mean.

That said, my understanding is that these soft markers don't mean much by themselves. A combination of markers can indicate a trend toward a certain condition, but even then it's nothing definite. Maybe your boy is just like my husband, who was a tiny baby, grew up thinking of himself as short, had a huge growth spurt in high school and went on to play college basketball at Duke!

PS - Congratulations on the motion, too. It is good to get your brownie points in before you take a chunk of time off - just to let them know you're worth the wait.

stillhopeful said...

Very frustrating that you have to pry this information out of them! It is so annoying how the information ABOUT YOU and YOUR baby does not flow freely to you, even though YOU are paying for all the procedures.

Hopefully they will have more reassuring information for you at the next scan. I don't blame you for not wanting the amnio, I didn't either. Did they give you the statistical odds for Downs from the 1st and 2nd tri screenings? If the stats were very low, that could help ease your mind if they don't come back with anything conclusive at the next scan.

Congrats on the motion! Always nice to get the praise and appreciation! :)

Riley said...

Congratulations on the motion - that's awesome and it's great that your colleagues recognized your good work and contribution to the team. Awesome! As far as the tech not providing you with that information - that infuriates me! What is the deal with these doctors, nurses, techs not communicating important details? Drives me crazy! I'm like you - I'd want to know all the possibilities, just so you can get your head around what's going on. I can't believe they didn't tell you this. I hope it all turns out to be nothing and it's no big deal, but, regardless, you have a right to this information!

just me, dawn said...

congrats on the work accolades :) awesome.
crazy about the US, weird how they didn't just tell you that you had one soft marker for downs.....and then schedule another US or at least see how you felt about it. I know that there are many markers, and one is usually not something to worry about, it is up to you to worry....you are the momma. At every measure I watch and then look at what the age estimate is from the measure, so far we have been good, but I still watch :)
hoping that your US is soon and you get good news!

Fran said...

Sweetie, checking in on you from Italy, very late here and Mike is asleep on my parents' couch so I'll be quick! I'm absolutely certain when they'll remeasure it'll be totally fine. I'll be keeping you constantly in my thoughts, love, Fran

Gwynn said...

I've been lurking for a while, but I just had to "come out" to say that I went through something very similar. My son's head in utero measured small and one of his femurs measured smaller than the other. It was a crazy time and in the end he was absolutely perfect.

I wrote about it a while ago (because I wasn't blogging during my pregnancy) just to commit the madness somewhere, in case someone else was going through something similar and needed some comfort.

I'm sure this nothing. The in utero measurements are not that accurate. Sometimes all the advances in science are helpful and sometimes they just cause more anxiety than necessary. I'm sure this is one of those times.

Here's the link if you're interested...

http://lifeontheothersideofthehill.blogspot.com/2009/07/to-be-saved-for-later.html

K said...

That would totally piss me off. Still, they must be confident enough in the marker being extremely soft, or they wouldn't have knowingly set themselves up for malpractice? Happy you are getting a repeat. All should be well. :)

tireegal68 said...

What is wrong with people? Suckitude! I am hoping it will resolve itself and there will be no worries, but they should tell you this stuff! I think you should tell someone off! They need to hear from you that it's not okay!
As for the star lawyer, well she just rocks!!! They love you and will do anything for you when you need them - I. E. When you are nine months pregnant and drop your pencil or need a drink of water , etc etc. Good for you! And good for your hubs on purging his book collection! He definitely is getting it, isn't he? Yeah !!!

Mad Hatter said...

So sorry to hear you've been given a kernel of doubt about the health of your beautiful boy - I'm really angry at how they handled the situation, too! It's so lousy that your doctor couldn't talk to you about it and reassure you that it doesn't necessarily mean anything at all! Good for you for getting a second opinion. Like most who have been commenting, I would be as worried as you, but I am confident that this is all for nothing because he is going to be just fine.
Love,
Maddy

IVF 40+ said...

Hi I have left a few messages - hope this one sticks!! So sorry you are have this worry. I hope you are reassured very very soon.

Congrats on the motion. Why does that make me laugh!

thinking of you honey. sending you a big hug.
EB

C Lo said...

If it's any comfort....

Ultrasound measurements are notoriously inaccurate past about 12 weeks. Measurements are virtually always "off", it's just harder to accurately measure babies as they get bigger, no matter how good the tech. I think my last ultrasound with my last baby said he was going to be around 8lbs.........he was, in fact, 11lbs. :P
See? Not really accurate. I'm not a huge fan of them for that reason........I think they often serve to worry people for no reason more often than not.

I'm the largest woman in my family and my husband is the tallest man in his family, but we both come from short genes. Our children are all small for their ages right now. My 10 year old daughter still generally wears size 7 clothing. But...both of us (hubby and I) were small until high school so.......I chalk it up to the mysteries of genetics. My daughter will probably be tall, eventually......just not quite yet.

Your baby is going to be beautiful and perfect and wonderful no matter what. He's a tiny little blessing in there, no matter what. :)

Elizabeth said...

Oh -- I'm so sorry for this worrisome test result and the pain in the neck it was to get the facts from the health care community. I know from experience that dealing with doctors and nurses all the time and them always tending to keep the whole picture to themselves is exhausting. I hope (and expect) that your baby is just fine. Everyone I know who has had markers for downs has ended up with a baby that is just fine. Obviously that doesn't happen each and every time, but my sense is that the "testing" and the markers are really super conservative; I mean, they catch a lot of babies who are just developing in their own way and at their own time. So, I hope very much it is all the same for you. Congratulations on the big work success -- that is so cool. Look at you do it all: grow a baby, deal with the health care world, be totally on top of work, get your house all organized. Love to you,
Elizabeth

romancing_the_stone said...

I am thinking of you....I know how scary this wait is. Sending you a cyber hug sister. Shell http://romaningthestone.wordpress.com

cindyhoo2 said...

Oh Sweetie, scary stuff! I hate hate hate that the stupid u/s has sucked some of the joy from this time. And even more than that I hate that no one thought that having a real talk with you would be important. It infuriates me that no one really discussed what soft markers mean and the research associated with those markers. ((Realize that I am a science nerd and facts make me feel better so please read the rest of this comment as the act of care and concerns that propelled me--- sort of a weirdly factual hug from TN)) In my review of medical journals (yes, I obsess), I read that a single measurement of a shortened humerous is more indicative of DS than is a shortned Femur bone. BUT that the long bone measure in isolation is a very poor indicator and a short femur measure (in isolation from other soft markers) carried the highest false positive DS prediction rate. So even though you have been very calm about this thing, I think you can relax a bit more. I think your u/s tech looked at your age and jumped to some wrong conclusions. :) I think little baby boy BWUB may not play for the NBA but I think soccer is cooler anyway.

And on another note, excellent work news. Big congrats!