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8. Here's another screening horror story with a happy ending.




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This article is from the Pregnancy Screening FAQ, by Lynn Gazis-Sax (gazissax@netcom.com) with numerous contributions by others.

8. Here's another screening horror story with a happy ending.

I wasn't sure whether I wanted to have the AFP test. I had read the FAQ and
saw all the people on the net who had had false alarms with it, so I talked
to my Dr. about it for a long time. She recommended it, but said I didn't
have to have it. I asked if the triple screen was available, figuring that
even if one of the numbers came back alarmin, that the other 2 numbers
might provide enough information so that I wouldn't have to have an amnio.
She said it was available.

After wavering back and forth for a month, I decided to go ahead with it.
So at 17 wks I had the triple screen. The nurse told me they were moving in
the direction of phasing out AFP only and doing all triple screen.

Well, you guessed it. The next week my Dr. called and told me that based on
the test my chances for Down's were 1 in 180 rather than the 1 in 800-or-so
that they should be for my age. The AFP number and the estriol number were
normal, but the HCG number was 3 and a half times the median.

Luckily I was able to get an appointment the next day for the level 2 U/S
and possible amnio. I was still hoping to avoid the amnio, and I figured
that they could look for signs of Down's on the U/S.

When we got there, the genetic counsellor told us that the HCG value was
the most sensitive of the 3 numbers - that a Down's baby could cause that
number to go up and leave the other numbers in the normal range. Also the
perinatologist told us that most Down's babies look normal on U/S. She
would increase someone's risk estimate if she saw certain things on U/S,
but she would never decrease it based on not seeing anything abnormal.

I think I was under the U/S for about a half hour. No signs of Down's were
seen, which made me feel a little better, but based on the stuff above, we
decided to have the amnio. The procedure itself wasn't that bad. It pretty
much felt like getting a shot or getting blood drawn, although I could tell
when the needle hit my uterus. But I was terrified because there is about a
1 in 200 chance of losing the baby this way, through the water breaking or
through infection. They said any fluid problems would occur within 48
hours, but an infection could develop slowly over 2 weeks, and the baby
could die without my noticing anything wrong. They told us it would be
10-14 days before the results were ready.

I was relieved after a couple days when I hadn't had problems. One bad
possibility down and two to go. Then the agonizing wait for the results. I
was terrified every time my phone rang. But then luckily on the last day
before we were to leave town on vacation, I got the call with good
results!!! Two down and one to go. We weren't sure whether we wanted to
know the sex early, so I told them to put it in an envelope and send it to
us so we could decide later if we wanted to open it.

Every day on vacation I made sure I could still feel the baby move, and my
Dr. heard the heartbeat at my next appointment, past the danger time for
infection. Whew!

I guess all's well that ends well, but I'm a little upset that despite how
informed I was about the AFP and all, that I still went through exactly
what I was trying to avoid, and that I put my baby at risk. It seemed like
each individual decision that we made, made sense by itself, but when you
look at the whole experience it was a series of escalating interventions,
which is the same thing I'm afraid of happening to me in labor. In fact, I
feel like I started it, since if I hadn't said anything, I would probably
have just had the AFP alone, which was normal, and not had to go through it
all. Maybe the risk of false alarms and amnios is just the price that has
to be paid by people like me who want to know early if anything is wrong.

Physically this has been an easy pregnancy for me so far. I didn't have bad
sickness in the beginning, and I've felt great all through this 2nd
trimester. But emotionally it has been very difficult, first with two
spotting scares early on and now this. I just want the baby here and safe.

On a lighter note, I got some more U/S pictures of the baby, including one
of it sucking its thumb. They said the baby was really active.

Now we've got the envelope with the baby's sex written in it, sitting at
home tempting us. I found out they told my Dr. the sex, too, and it's right
in my chart! She didn't know I didn't know, so it's a good thing I
mentioned it before she let it slip.

I just don't know if I want to know ahead of time or not. Part of me thinks
it's silly not to look at the information that's available. But on the
other hand, if we knew then it would be hard to keep the secret from
others, and I don't want to get sexist gifts like clothes with pink frills
or footballs. The knowledge of the gender can be misused for sexist
inculturation, so maybe it's an advantage for the baby to stay
gender-neutral, at least while we're shopping for nursery stuff and
clothing. I'm trying to think of advantages and disadvantages either way.

Anyway, for those of you who have read this far, thanks for listening, and
celebrate with me that this scare is over!
-----------------------------------------
About two weeks ago you emailed the Prenatal Testing FAQ to me and I wanted
to say thanks. After reading the FAQ I decided to take the MsAFP because my
husband and I felt like if something was wrong, either downs or a neural
tube problem, we would want that information now vs. after delivery.

My test came back with a 1/127 risk of a neural tube defect. (I'm 33 years
old.) I got the results from the perinatologist last Thursday afternoon and
was scheduled for a level-2 ultrasound for 8:30 a.m. the next morning. (I
was lucky I didn't have to wait over the weekend with all the worry and
anxiety! That part was tough.)

During the ultrasound we discovered that we have a healthy baby girl on the
way! Her spine, brain, and all other organs are just fine. The ultrasound
lasted about 30 minutes and seemed to me to be very thorough. (We also got
some great pictures of the baby yawning too!)

If I have another child, I would still take the AFP screening. My husband
and I are not against abortion and would consider it if we knew there would
be serious health problems that would not allow the child to have a normal
existance.

Thanks again for the FAQ.
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