If you’re wondering whats going on with my life, let me fill you in!
We moved. Finally. Got into the new house, put everything away or in the garage when an enormously disgusting strain of the FLU hit our family. All of us. Me, the 4 kids and the hubby. Good times. THEN!!!!!!!!!! I got an abnormal AFP test back from my doctor.
For you men out there, or people who aren’t familiar with standard tests they run on pregnant women, at approx. 18 weeks, your doctor usually runs a gamut of tests that check a certain protein called Alpha-Fetoprotein and a few other hormone levels. It basically tests for things like Spina Bifida, neural tube defects and Downs Syndrome. Well… I go into my doctors office about 2 weeks after the test was administered and having not heard anything one way or the other (since they told me they’d call me in a few days with results if it came back positive/abnormal) I assumed that everything was ok. When I was checking out, my doctor’s nurse runs up to me and quite loudly, in front of everyone waiting, says “Oh ALLI! I’ve been trying to call you! (lies) Your AFP test came back abnormal.” She then leaned in closely to speak suddenly very privately (too late) :
“I don’t know the exact numbers, but we need you and your husband to go in for genetic counseling and for a level 2 ultrasound and possibly an amnio…soon, like tomorrow.”
She grabs my arm and takes me to the front of the line and says “Cheryl! Mrs. E needs to get in SOON to Desert Perinatologists for testing. She had an abnormal AFP!” and runs away. I could feel the eyes of the 352,365 pregnant women in the waiting room burning into my back with intense empathy while at the same time they were feeling pity/relief it wasn’t them.
Here’s where it gets really good. Cheryl cannot reach the perinatologist’s scheduling lady immediately, so she tells me she’ll call me with the appointment time. We go home, we’re stressed out, wondering if this sweet boy I’m carrying has something horribly wrong with him, and we realize 2 days later during the weekend that she’s never called us back with a time to go in.
I go into work on Monday and what do you know, we had an appointment the previous friday that she called me on MONDAY to remind me of, very apologetically. Honestly people, am I wrong to want to disect this woman’s ovaries while she lays on a bed of nails?
I call and make my OWN appointment for the following friday (last friday) and we wait nervously all week for the day to come. As we arrive, there are other women, equally nervous and visibly shaken, waiting in the gorgeous waiting room. A half an hour later, they call us back where a genetic counselor drills us about our heritage and our family tree. Mine is pretty basic. A few bouts of high blood pressure, but we’re a big fat scandinavian family on both of my parents side, my dad being 100% Swedish, my mom being 50% Swedish/50% Norwegian…can ya get any whiter than me? Anyhoo, we get to my husband…he’s half black, 1/4 Korean 1/4 Japanese. He’s got lots of diseases on his side, but either way, neither of us have had any of the things they’re looking for in this baby.
We go out into the ultrasound room where I’m schmeared with warmish lubricating jelly all over my belly and a woman who was really nice and totally hot (I might add) did an extensive and amazing ultrasound of our baby. Let me tell you…technology cannot be more amazing when you’re looking at your baby through one of these $500,000 machines. I could see his profile, I saw him suck his thumb and fingers, he made faces, he has a dimple on one cheek. AMAZING. What we were looking for was any kind of abnormality that would point to any disorder they were looking for. We ruled out spina bifida and cystic fibrosis, we ruled out a few other things, but they decided it would be smart for me to have an Amnio. If you don’t know what that is, let me brief you on it.
5 inch needle. Jam it directly down into the water surrounding the baby. Move/dig around while you’re finding your way around in there, make certain to take no concern with mother’s comfort. Suck out 3 huge syringes of water. Pull out violently. The end.
Good times.
Anyway, I have to wait 10 calendar days, but this test will tell us exactly who our baby will be. They will be testing the skin cells from the baby that are sloughed off into the water they extracted for dna, and a study will be done on at least 15 cells to look for the genetic marker that will tell us if he has Downs Syndrome.
I’m only 32. Am I too old to be doing this?
Thanks for listening.
Amanda Says:
March 20th, 2006 at 2:54 pmVisit Amanda
I’m so sorry you have to go through all of this! I was warned by several girlfriends that the AFP has a lot of false positives, generally proven OK by amnio. Hopefully you fall into this group.
We decided not to do the AFP for all the panic and worry, since we are low-risk anyway.
Best wishes for an otherwise uneventful pregnancy!
Alli Says:
March 20th, 2006 at 2:58 pmVisit Alli
Thanks Amanda…I usually don’t do the AFP but since I’m over 30 now (I had my last baby when I was 25) I decided it might be worth a shot. And you’re right…its just a lot of stress and panic and worry. I need Calgon.
Shannon L Says:
March 20th, 2006 at 3:01 pmVisit Shannon L
AFP tests are so unreliable. I worked with a woman in her mid-thirties who had an abnormal test and her baby was fine.
Those tests are notorious for false-abnormal results. I’m sure you’ll worry anyway, but I’m also sure that the baby will be fine
Alli Says:
March 20th, 2006 at 3:47 pmVisit Alli
EXACTLY Shannon. I’m getting email from a lot of you readers since I posted this entry about false positives. They do the test then tell you “don’t worry, we’ll call you in 2 weeks”
makes you want to ask “Are you FREAKIN’ KIDDING ME??????? Relax? Whatever…”
But yeah, hearing this from you guys makes me feel better. I like these kind of comments.
spit Says:
March 20th, 2006 at 4:16 pmVisit spit
32 is not old as far as genetic risks and if you’ve got 4 other healthy kids, everything will hopefully be ok.
Kisha Says:
March 20th, 2006 at 4:39 pmVisit Kisha
Try not to worry too much (easy to say, but tough to do, I know)I am ~5 months along with my 2nd daughter. The kiddos will be 9 years apart, I am almost 41. I had the CV testing becasue I had to be sure that at least chromasomally, all was ok. It was a very long 10 day wait. Everything turned out fine, and I’m sure all will turn out the way it is supposed to for you as well! Good Luck!
Kisha White-Farrar
Matthew G. Says:
March 20th, 2006 at 4:42 pmVisit Matthew G.
My thoughts and prayers are with you…
Helen Says:
March 20th, 2006 at 4:56 pmVisit Helen
Ooh Alli, sorry to hear you’re going through this. I know nothing about AFP, but know how every little test result that came out even a little “off” used to terrify me. Here’s hoping everything comes out ok and, uh, I don’t like nagging you to post, but please do let us know as soon as you can, k?
rachel Says:
March 20th, 2006 at 5:20 pmVisit rachel
Prayers.
Holding that baby in light.
Peace.
Arthur Says:
March 20th, 2006 at 5:44 pmVisit Arthur
You are not too old (I hope) as Jp is in her 19th week and will be 38 when she delivers our son
Mike Lyne Says:
March 20th, 2006 at 6:17 pmVisit Mike Lyne
I’ll keep my fingers crossed for ya… hang in there Alli.
Mary Ann Says:
March 20th, 2006 at 6:26 pmVisit Mary Ann
AFP tests are notorious for false postitives- I had one too and had to wait 2 wks for a level 2 ultrasound. I declined the amnio because the genetic counselor say nothing that looked troubling and we had a healthy baby boy. Try not to worry(I know that’s impossible)- I bet all will be just fine. I will keep you and your sweet baby boy in my prayers.
Hugs- Mary Ann
princessr9 Says:
March 20th, 2006 at 6:49 pmVisit princessr9
I hope your baby is ok. I’ll keep you in my thoughts.
Libby Says:
March 20th, 2006 at 7:40 pmVisit Libby
Thinking good thoughts for you and that little boy of yours. Sorry about the asshat nurse. Crikey.
Dianna Says:
March 20th, 2006 at 9:11 pmVisit Dianna
You know Alli, it all is scary but those AFP tests have such a high rate of inaccuracy here in KY alot of women opt not to take them. They have a really really high percentage of inaccuracy rate. Those 2D ultrasounds are very very cool! I am so glad that everything looked great. I wouldn’t be too rushed to have the amnio if i were you, that comes with risks of its own. But if it would make you feel better I totally understand. Best medicine of all is prayers.
Mega hugs and many prayers coming your way
Love
dianna
Elizabeth Says:
March 21st, 2006 at 7:36 amVisit Elizabeth
Prayers that this will be simply a false alarm! I had my last child at age 31, with no problems…you are still young, so I would not expect any problems. My last child had NO positive blood tests to confirm I was pregnant…they tried 3 times…finally saw her on ultrasound. So their tests are all limited in their effectiveness, in my opinion!!
Heather Says:
March 21st, 2006 at 11:26 amVisit Heather
Alli,
Don’t worry too much about it. When I was pregnant w/my 2nd I had a “false positive” AFP as well. The nurse decided to call me at work & tell me that my baby might have problems.
The time waiting for the genetic counseling/level 2 ultrasound was very tense. Our daughter, however, was fine - no problems at all.
I just wish that they would make sure that -even though the AFP is a good test (and I would encourage women to have it)- it can sometimes result in a “false positive”. Women need to know that. It would save a lot of stress while waiting for the other ultrasound.
Good luck & I’ll keep your family in my thoughts.
JeniB Says:
March 21st, 2006 at 11:35 amVisit JeniB
Oh man, how nerve wracking for you. Those tests are such a pain. If your dates are slightly off (you coudl be farther along or not as far along as you thought kind of stuff), that increases the chances of a false positive. I think I know of more people who have had false positives (I did too) than real results. And a friend of mine here had normal results and was told everything was fine until her baby was born and they discovered he had Downs Syndrome. Go figure. I am over 32 and still want more childfren but your post got me thinking of whether I could handle the added anxiety the staff bring a person when pregnant. With my daughter, I would be all fine and happy until a visit to their office where it was all gloom and doom. I’d walk out needing a xanax or something!
Hang in there and good luck with the next test (Amnio). I am opretty sure they don’t wiggle the needle around in ya..it’s pretty straight forward in and out. {{HUGS}} either way-it sounds horrible.
Kristin Says:
March 21st, 2006 at 2:04 pmVisit Kristin
What a hurrendous amount of trials all at once! Hope seems like such a small word here, but I truly hope that everything comes back positive for your child. A healthy baby boy that can drive you crazy playing sports in the house! Take care of yourself and that wonderful little spirit!
Grace Says:
March 21st, 2006 at 4:56 pmVisit Grace
Please try not to worry about your baby. I also know people who have had false positives on those tests….
I have read your story and know you are an incredibly strong woman who is plowing her way through yet another obstacle that life has thrown at her…..
Kris Says:
March 21st, 2006 at 5:15 pmVisit Kris
Why, at 32, did they even suggest the AFP? You already have healthy children and you are far from middle aged.
Recommendations for this test are: if you will be 35 or older when the baby is due, you have a personal or family history of birth defects, you used or were in contact with possibly harmful medicines or drugs at the time you became pregnant, you have diabetes, an u/s shows a problem with the baby’s development, or you or the baby’s father has a chromosome problem. Otherwise it’s just not necessary.
As others said, it’s notorious for false positives. My OB/GYN told me that he doesn’t even recommend doing them, because really, if you don’t plan to terminate, what’s the point in knowing? You can’t change anything and all it’ll do is make you worry. Some people use the excuse “to prepare ourselves.” Yes, you should be preparing yourself. For a new baby. (I know you are. I’m just sayin…)
“It has been estimated that every positive screening will cost approximately $106,000. Of the positive test results, 90% of these babies will not have any anomalies. There may be other benign reasons for the elevated or low levels of the hormones, specifically the gestational age, or multiple pregnancies. ”
My OB also said the risk and pain of amnio wasn’t worth it, either. So we never did either test. I was 31 and had already lost two babies. We decided there was not going to be an abortion even if there were a problem with the baby, so there was no real need to do it and potentially cause harm to the baby and worry and excess stress to us.
Here’s hoping your next tests come out normal. Sadly, there’s no testing to see if your kid will grow up to be a delinquent. I know a lot of people that that kind of test would’ve been a lot more helfpul than an AFP.
Noelle Says:
March 21st, 2006 at 5:48 pmVisit Noelle
Wow, that really sucks. Sorry you’re going through all of that. Hang in there!
Heather Says:
March 22nd, 2006 at 8:26 amVisit Heather
I’ll be thinking about you. Hopefully everything will be fine when you get the results back. Endless worry, isn’t that what parenting is all about?
phoenix Says:
March 22nd, 2006 at 8:53 amVisit phoenix
I went through the same false positive. My doctor recommended the amnio but I refused. I was 36 and he was concerned as it was my first baby. All was fine and he is now 13. Hugssss Alli! All will be ok!
Sponge Says:
March 22nd, 2006 at 9:00 amVisit Sponge
Alli,
You are doing all the right things. Hopefully it’s just a false positive, and no, you are not too old. Hang in there!
Jason Buckley Says:
March 22nd, 2006 at 10:01 amVisit Jason Buckley
Yikes Alli! We went through some really hairy shit during our pregnancy, so I totally feel your pain. Good luck with the amnio!
matt Says:
March 22nd, 2006 at 10:41 amVisit matt
Good luck to you.
annierae Says:
March 22nd, 2006 at 1:35 pmVisit annierae
Oh the joys of motherhood & pregnancy! I have a new grandson on the way in a couple months and I’ve been getting to enjoy it vicariuosly. I hope all continues to go well with you. I like many others have thouroughly enjoyed(?) being a part of your story. I had a son in a wilderness program around 2000. Oh the things we know now that we didn’t know then. Take care and keep your chin up.
Julia Booth Says:
March 23rd, 2006 at 10:47 amVisit Julia Booth
wow, that’s going to be one interesting looking baby -with all those cultures mixed in.
Hope all goes well.
Tammy Says:
March 23rd, 2006 at 2:37 pmVisit Tammy
Wishing you good news and a happy future with your son Alli
Lauren Says:
March 23rd, 2006 at 4:05 pmVisit Lauren
Hello beautiful! I hope all is well. Both you and “your boy” (haha) are both strong people, so I am sure everything will be fine. And I miss you two! You must promise to get ahold of me once the baby comes! These tests are scary, and sometimes incorrect, but taking ever precaution is still important. Love you!
Enigma Says:
March 23rd, 2006 at 5:06 pmVisit Enigma
My wife and I went through the same thing. She was 32 then. Everything was fine.
Hang in there. I will be praying for you and yours.
Regina Says:
March 23rd, 2006 at 11:38 pmVisit Regina
My mom went through the amnio with my little brother (she was 35, almost 36 when he was born). To be certain, it’s scary. It will for sure clear up the sex…DNA’s pretty reliable on that one. A cousin (on my husband’s side of the family) didn’t have the amnio, and discovered at birth that her daughter had Down’s. I think I’d rather know ahead of time to get myself mentally prepared. I’ve seen the heartache and shock that surprise can engender.
So take this for a blessing, no matter what the results.
CL Says:
March 24th, 2006 at 12:47 amVisit CL
Glad you’re back, Ally. I can’t believe you manage - four kids and a baby on the way!! Good luck with everything. I still hope to see your story in print some day.
The pregnancy stuff is interesting and helpful too.
ariadneK Says:
March 26th, 2006 at 2:49 amVisit ariadneK
BLESS YOU ALLI!!! I am so sorry that you have had to go through this, and the fact that you have been treated like such crap by the alleged “medical professionals” during this time speaks volumes to the shabby state of mdical care now prevalent in the U.S. Fuck them. I do pray (and I’m not typically a prayin’ woman, mind you!) that everything great falls into place for you…in terms of everything.
ariK
someone Says:
March 27th, 2006 at 8:23 amVisit someone
i know it can be very scary doll - good luck, and perhaps a public hysterical breakdown at the nurse will shame her into some decency.
Kristina Says:
March 27th, 2006 at 6:09 pmVisit Kristina
I remember when I was preggo and took the AFT test, they advised me that abnormal results are common and often are nothing but a false alarm. Definately go through with the amino, but don’t worry too much until the results come in.
I’m sure everything will be fine.
rckymtnred Says:
March 28th, 2006 at 4:34 pmVisit rckymtnred
Wishing you and your baby the best. - happy and healthy.
Sis B Says:
March 29th, 2006 at 4:23 amVisit Sis B
no, you’re not wrong for wanting to remove the woman’s ovaries, but i think dissection is too kind.
these tests and things are somehow supposed to make pregnancy and childbirth more safe, but sometimes they just cause more heartache than they’re worth. thinking of you and your baby. i opted against the amnio (extraordinary fear of needles), but the level 2 ultrasound kicked ass. my baby was (and is) perfectly healthy.
thinking of you and sending the little guy my good energy.
K2 Says:
March 30th, 2006 at 8:55 amVisit K2
Alli, I was 38 when I had Sparky, he’s healthy and active and the only time I feel my age is at the end of the long day of chasing him around. I’m saying a prayer for the health of your little guy. I shall call him Jingles.
Sami Says:
March 31st, 2006 at 1:09 amVisit Sami
Your doctor’s office staff needs some lessons in a) how to handle abnormal results and b) how to schedule a specialist appt. I’d be livid, and I’m sure you are. I’d also send a nice spiffy note off to the manager of the practice to say - listen this is what I had to do because you guys didn’t.
I hope the amnio shows everything is well and that all continues to go well.
AnnieTB Says:
March 31st, 2006 at 9:39 amVisit AnnieTB
Alli, first off, I am glad you are feeling better after reading all the replies. It’s been 11 days since you posted, so I am concerned.
More importantlty, when the worry is over, you should
get good and mad and then take action against the person who violated the HIPPA rights you have. Look it up if you dont know about them, but being in banking I am sure you had the HIPPA class. It is serious. She and her employer can be fined. She violated your right to privacy. Do not sit by silently, at least tell the staff lead that you are aware and may take action. If nothing else, it will serve as a learning tool for other staff. I’m not trying to get the person in trouble, but it is a real problem. I think every chance we get to learn a bit more about how to protect clients rights is a good thing.
Hoping all is well at your home.
Victoria Says:
April 1st, 2006 at 2:26 pmVisit Victoria
Oh, I know this must be absolutely terrifying. My very best friend was told, rather her mother was told that SHE had spina bifida, but her mother had her anyway. My friend has NOTHING wrong with her. NOT ONE THING. She is smart, beautiful, and my total BF of 15 years +. So, I am praying for you and hoping it was all incorrect. Also, if you have 4 other healthy kinds, shouldn’t that help be an indicator? I don’t know what I am talking about. I hope you are okay. And I hope you keep us updated. Stay well.
Also, if you are going to password protect the rest of your story, may I also know the password? I REALLY hope it’s not rude of me to ask.
Thanks, Ali.
Stay safe. Smile.:)
Peace,
Victoria
Rae Says:
April 3rd, 2006 at 8:11 pmVisit Rae
My thoughts and prayers are with you and your wee one, Alli. *hugs*
arthur Says:
April 7th, 2006 at 7:53 amVisit arthur
I hope all is ok and this finds you well. Are you going to finish the rest of your story? I’m not trying to give you a hard time as I imagine like the rest of the world your life gets hectic; just curious is all
Kim Says:
April 7th, 2006 at 4:00 pmVisit Kim
why are they doing this test on you at 32? doesn’t make sense. i would be asking a whole lot of questions.
dotbar Says:
April 7th, 2006 at 8:08 pmVisit dotbar
I don’t know why they even do those test. I think I’d refuse rather than go through all of that only to find the baby was okay. What if a woman aborted her baby and the baby was fine??? I’d just have my baby, come what may…..