No more freakin' tests, part II

When our beloved Dr. Wong finally got the results of our Level 2 ultrasound faxed to him from the Evil Ultrasound Technician, we found out that she was not being entirely forthcoming when she said, "Everything normal!". In fact, Mango showed one finding that wasn't normal: he has an "intracardiac echogenic focus", which is a "soft marker" for Down's Syndrome. As a result, the risk that he has Down's is now considered to be twice as high ... though twice as high as what, I'm not entirely sure. Based on Greta's age, the risk is supposedly around 1 in 125; based on a "quad screen" blood test that she took a few weeks back, it was pegged at 1 in 40.

An amniocentesis would give us a definitive answer, but carries its own risk: about a 1 in 200 incidence of miscarriage.

So this past week has been another thrilling ride on the parenthood roller-coaster, as we've struggled to understand mathematical probability (should have paid more attention in high school) and medical science. We had several conversations like this:

"So, should we do the amnio?"
"No."
"Are you sure?"
"No."

The one comforting thing is that, on our favorite parenting bulletin boards, many people were talking about having gone through the exact same thing, and all of them had had normal, healthy babies. In fact, many non-first-time parents said that they declined most screening tests after the first time around, because the stress they caused was enormous, the risks they revealed were small, and the choices they led to were limited.

Here's an email exchange between Greta and her grandmother, written a couple of days ago as we tried to decide whether or not to do the amnio. I think this helps illuminate what a lot of parents (especially first-time parents) go through nowadays when dealing with prenatal screening tests.

From: Greta
Date: Wed, 30 Aug 2006 15:12:40 -0400
To: Toni
Subject: News from Doctor


So the doctor called me this morning. He got the results of the amnio. Good news is that anatomically everything is generally normal. He said the reason they want to look at the brain again is that the baby might not have been in the right position or they just couldn't see what they needed to see. Nothing to do with the blood test or Downs, etc.

The bad (or kind of bad) news is that the ultrasound picked up an echogenic foci or focus in the left ventricle of the heart --- a calcium deposit in the heart muscle. It's not a health hazard, but it is something that is sometimes associated with Downs. The way the doctor put it is that if I had a 1 in 10,000 risk of Downs, this wouldn't be something they would worry about, but since I have the 1 in 40 after the blood test, it's now 1 in 20. Still 95% chance the baby doesn't have Downs, but the odds just keep getting smaller!

So...he said I might want to reconsider amnio. He wasn't pushing me, but said he has to tell me it's an option as part of his job. I asked him how he felt about the safety, and he said it has a risk but that if it were him, he'd do it, just because he sees these things all the time and he trusts it. He said it really depends upon what kind of personality a person has and how strongly they feel about the amnio or finding out information.

Jim and I are considering amnio now...I feel very torn. We will keep the baby no matter what...but I just feel like I've been worn down and just need to know now. I don't want to risk the baby's life, but it's a small risk...blah blah. I also feel like there might be no benefit to the baby in my having the test other than I won’t be stressed out for the next 4 months and putting that on the baby.

I'm open to suggestions though...still not 100% decided.

The one cool thing is he said that if the tech said she thinks it's a boy, it is. He also said he would check at my subsequent appts to see the "two nuts and penis," as he put it. Hee hee.

Sorry it’s not better news.

Love,

Greta



-----Original Message-----
From: Toni
Sent: Thu 8/31/2006 6:48 AM
To: Greta
Subject: Re: News from Doctor

Hi, dears. Some thoughts came to me as I read this latest e-mail. They are not advice, not even suggestion. Just some thoughts that you might consider as you both ponder the next move.

Any baby being born now will know the task ahead in this world. Of course, they will not recall it as such, but each will have the resources needed for the life signed up for.

Given that, he will have chosen you as parents for the qualities you have developed and for the environment in which he can grow into his own place. Or, just from love. He could have chosen you just from love. What a marvelous thought!

You count, too. It will not help for you to "tough it out" by not knowing the info the amnio could show if that not knowing will be really taken on as a difficult job.

Is this a matter of mind or is it a matter for the heart to answer to? Trust your own answer to that. There is no right answer. There's only what's so.

I would think to talk to him every day, play music you like as a lullaby, pat-pat-pat your belly as you feel him turn and tell him you hug him. all in the course of your daily life, not as a job, not as a correction of any kind, just let him know he's welcome just as he is.

I believe there are multiple choices "out there" in the vibes around us. How I look at what my choices are determines to some extent the resultant experience or manifestation. It might affect the choice the baby will make while still in your womb.

------ Forwarded Message
From: Greta
Date: Thu, 31 Aug 2006 08:05:24 -0400
To: Toni
Subject: RE: News from Doctor

Jim and I talked about this a lot last night and I think the stress I was feeling was the idea I might have to put the baby in harms way simply to find out something that we can plan for anyway, just not know for sure right away.

We read a lot online about other people's experiences with this specific thing and most of them had healthy babies who didn't have downs. 1 in 20 isn't SO bad!

Jim was quite upset last night with "the medical establishment," and he feels pretty strongly about no more tests at all. We have been frightened and upset with the results every single time and there has never been anything definitive. So, even though the amnio would be definitive, we've realized we don't NEED to know.

I would never forgive myself if I did something that could hurt the baby. I just can't do it.

So, we wait and we accept that there's a chance the baby will be different and love him anyway.

We both feel pretty good about this decision. I WOULD love to know for sure that he's "normal," but I just can't take the risk and I also feel like it's wrong somehow to disturb his safe, cozy home.

Thanks for all of your advice and thoughts.

Love,

Grets