AFP Follow-up, warning very long!

[Elilly]

I posted a couple of weeks ago about having alot of stress about waiting for the AFP triple marker test to come back. So, I'm just following up. Well, the stress definitely increased on Mon April the 5th when we got the results back (I work in a hospital lab so even though it is against every HIPAA law to man, I usually see my results before my Dr). My AFP was 2.59 Mom. A normal result is 0.5-1.0 Mom. So, my Dr was on vacation and I called the office. They scheduled an emergency ultrasound for Wed. (please note that is 2 whole days later!!!) On the ultrasound everything looked okay. She saw no signs of spina bifida or an open abdomen but she wanted to have the test redrawn to check. So sure enough, Friday AM, the test came back the exact same. So, I had to be referred to a high risk OB for genetic counseling and level II ultrasound. She called around and the earliest she could get me in is next Tuesday!!! Needless yo say, by this point I had lost about 5 lbs and was only sleeping 3-4 hrs per night. I was driving my husband insane too.
Long story short, there was a cancellation and b/c I had bugged the people at IU Med Center so much, we got in this week and everything looks okay with regards to the possibility of spina bifida. The Dr was 90-95% sure that the baby did NOT have it so we elected not to do the amnio.
Now I'm sure that many of you at this point would say that this is exactly why you would not have the test and I understand that. But, if I had to do it all over again, I can't believe I'm actually saying this, but I'd have it again. I learned SO much during the genetic counseling part. The benefits of having a pediatric neurosurgeon already in-line, scheduling a c-section, and getting counseling, special car seats etc ahead of time would be best for the baby and us. I know not many will agree with me, but being a planner, I'd do it again.
I still have to follow-up with the specialist at IU for more level II ultrasounds and monitoring b/c women with increased AFPs whose babies have no identifiable defects have an increased risk for pre-eclampsia and placental insufficiency. Also, I am switching OBs b/c thru all of this, I never actually spoke with my Dr b/c as the RN said it, "He's seeing patients all day. He won't have time to talk to you". Can you belive that! I called the OB that delivered DD and he is willing to take me back even though he doesn't technically deliver at my hospital anymore. I guess he gets so many "courtesy" procedures there since he was on staff for so long there and he is willing to have me be one of them. Rejoice!

[jubilee]

I'm sorry to hear about your results and the scare you have been going through! Good for you for switching doctors. A good doctor would make the time to be there for you in this kind of situation! Maybe he doesn't realize his nurse is "filtering" his calls like this, and a letter from you would let him know. However, once he saw those results, I can't believe he didn't personally call you! Whata jerk. I'm glad the findings still look good for you, and will be praying for your little bundle! Keep us updated!

[Calmegja2]

I'm glad things are looking positive. My pregnancies do have the placental insufficiency issues that are highlighted by the AFP, so I know what it's like to have have a high result. Scary stuff, until you can get some clarity.

And I definitely think a physician switch is in order, if you can confirm he knew what the nurse said, and that's his policy.

Keep us posted, and I hope things continue to progress well.

[Momof3Labs]

Erica, I'm sorry for the stress that you've been going through! A good friend of mine had an elevated AFP result (probably due to her age and a vanishing twin) and her daughter was born with no problems, and her pregnancy was uneventful (well, after losing the twin).

Glad that all is well again!!

[Marisa6826]

Good grief Erica!

I'm SO sorry that you're going through all of this.

I didn't do an AFP last pregnancy because I was told that one twin would cancel out the other and it would be inaccurate regardless. I did end up having to do an amnio (horrible procedure), because, ultimately, there was something wrong with Sophie's twin brother.

I completely understand what it is to have 'alarms' go off during a pregnancy. It was honestly one of the darkest times in my life. Please continue to post away should you need a shoulder, or just need a sounding board. We're all here to listen and hopefully offer some useful support.

Additionally, good for you for busting out of your OB's office. What an ass. I would send him a letter with a few choice words. But from prior experience, he may have never even known what was going on. It could very well be the result of ineffective office management. I have changed doctors more than once due to some seriously crappy support staff issues.

My OB no longer takes insurance, but we're sticking with him anyway. Not only have I been going to him for over ten years, he has always, always gotten back to me within a half hour - and even better yet, I like his two covering OBs. When things were falling apart with Harry (Sophie's brother) his office manager did everything short of holding my hand. I can't say enough good things about him. I truly count myself lucky to have found such a competent and sweet OB.

At any rate, please keep us posted.

You're in my thoughts

hugs

-m

[Elilly]

Jessica,
If you don't mind sharing, how do they monitor the placental insufficiency? I don't go to my new (really my 1st OB) until Tuesday. Any info would be helpful as I try to understand all of this.
Thanks!

[Elilly]

Thanks for the support. I agree, this was the darkest 2 weeks of my life too. No eating, sleeping, normal conversation etc. It seemed that all I could do was think about if this baby was going to be okay and everything else was trivial in comparison. I went to work but feel guilty for having been paid b/c half of the time I was on the phone and the other half was spent crying. I even had a hard time spending time with DD b/c all I could think about was if this baby was going to be able to do the things that DD was doing. Stress is a very powerful thing. Hopefully all is better now. Atleast I'm eating, sleeping, and back on the boards!

[Sarah1]

I'm just wondering--why was your amnio so bad? (I'm so sorry you lost Sophie's brother, by the way. So sorry.)

I'm a person who had a completely uneventful pregnancy, normal triple screen, etc etc etc, but I was SO ANXIOUS the entire time. In the back of my head, I was always thinking there was going to be something wrong w/the baby, and because of my anxiety, I swore next time I would do an amnio or a CVS, even though I'm under 35.

I think my anxiety may have something to do w/the fact that my dad is an OB. I grew up hearing too many stories.

[cinrein]

(((Erica)))
I'm so sorry you've been through this and glad it looks like your baby is OK. As someone who had the elevated AFP before, I know something of what you are going through. I will keep you and your family in my prayers.

Cindy and Anna 2/11/03

[sweetbasil]

Erica,
I'm so glad things are looking up for you all, sweetie. What a scary time...there are really no words to capture that level of fear. When I was 20wks pg w/Charlie, the ultrasound showed enlarged ventricles in his brain. We were sent to a perinatologist for a Level II Ultrasound and to a related clinic for genetic counseling, as DH's sister has spina bifida and was born with mild hydrocephaly. Everything turned out fine, fortunately, but it was a terrible few weeks there.

Like you, we were very encouraged by the genetic counseling session and so relieved by the Level II ultrasound coming back clear. And if it happens again, we'll go through the same testing with any subsequent children we're blessed with. The things doctors can do to help a baby with spina bifida (including surgery before the baby is even born to close up any spinal openings) are amazing, and it was worth it for us to know if there were interventions the baby might need.

Even with a positive ultrasound and everything, the stress and the entire situation kept DH and I quite uneasy through the duration of the pregnancy...and there was nothing like holding our little boy and seeing that he was indeed healthy, that could completely remove that seed of fear that had been planted almost 20 weeks before. If you ever need encouragement, or just to chat, please don't hesitate to e-mail or PM me! Hang in there...you're going to have a wonderful, healthy little baby in November!

Hugs,

[Elilly]

Thank you for the support! I'm trying to stay very positive and not worry about the other diseases/abnormalities that also show increased
AFPs. So far so good. I am getting antsy already for this baby to be here so that I can hug it and tell it how much we love him/her.

[Marisa6826]

Sarah-

I PM'd you :)

-m

[Calmegja2]

Erica...

I was diagnosed with a clotting disorder (APLS, specifically, elevated anticardiolipin antibodies), and had a preterm delivery due to an abruption. After that, when the bloodwork came back, they diagnosed the problem, and my further pregnancies were medicated (heparin), and monitored closely. I had multiple, multiple ultrasounds, non stress tests, and the AFP was used to gauge placental health. I was on restricted activity as well, and I delivered my last three babies as soon as we had mature lungs, though I knew if things turned, I would likely be given steroids and babies would have been delivered earlier.

My condition only occurs in about 2% of pregnancies, though the protocol for care is sometimes followed in women without the positive clotting factors, when nothing else can be found.

Hope tha helps. My condition is really rare, so hopefully, it won't be an issue for you...

Oh, and as a side note, my daughter, Callie, her given name is Colleen. Love your name choice for your eldest! ;-)

[jbowman]

Erica,

I am so sorry that you have had such a rough time, and I am glad to hear that things are looking better.

It sounds as if you might be in the Indianapolis area. I am familiar with some doctors (good Ob/Gyns) in the area (I was born/raised there, my family, ILs, and a ton of friends still live there). FWIW I am happy to get referrals, etc, if you need additional help, support, etc.

[JenaW]

WOW!! What a rollar coaster you have been on...and with pregnancy hormones to boot! I am not sure I would have had the patience you have. THANK GOD everything sounds ok for now! I will keep your little bean in my prayers.

AND as for your OB office, what a JACK$%@. I am so glad you switched. As someone who works in OB (and I too look up all my labs before the doc calls me with them;) ) I can't believe he was "too busy" to talk with you. I agree with whomever mentioned writing a letter to him. If one of my patients called about worrisome lab results, I would make darn sure I called her back as soon as possible. Even if I made a quick call in between pts (or had the nurse call) and told her I would call at the end of the day to discuss things more thoroughly. Thank GOD your old OB will take you back.

Oh, I too have antiphospholipid antibody syndrome and am on heparin. I had a mild case of pre-eclampisa with my son. I declined the AFP for the main reason of the false positives (although your reasoning and rationale made a lot of sense to me). My OB didn't mention using it to monitor my placenta, but I will have frequent u/s (incl doppler studies of the placenta) and NSTs as I get farther along. I hope the rest of your pregnancy goes much more smoothly, and even though you will have the icnreased monitoring, that nothing else will happen.

Jera
Mom to Carter ~ 05.13.03
Cautiously pregnant with #2 ~ EDD 10.13.04

[Calmegja2]

Jera...

I had two peris who liked to use the AFP as a gauge, and another who declined to use it, because I had such severe bleeding going on already, we knew there were placental problems, and how they were manifesting. I had three peris, because we moved during different pregnancies. They were all fabulous. I was very, very lucky to have them.

I always thought the doppler studies were fascinating, with the contrast color. And I got pretty good at identifying baby pieces and parts from ultrasounds images...;-)

I wish you luck. I had three healthy babies after my APLS diagnosis, so if you ever need to talk, page me around here... ;-)

[jesseandgrace]

I am so sorry you went through this. We had the same thing happen with Grace, except I think the AFP was low, making her a risk for Downs Syndrome. I was told a week before Christmas, and they could not get us in for the level II ultrasound until after New Years. It was horrible. I got terrible information from the midwife we were using, basically making us think she had DS, when there are actually more false positives than actual positives. We also elected not to do the amnio after the ultrasound looked good. I was definitely more stressed throughout the pregnancy worrying about it, but in the end everything was fine, Grace does not have downs syndrome.

We switched doctors immediatly because there was no way I would ever trust that midwife again. Even though I was 20 weeks along the switch was definitely the right thing to do!

Good luck to you, and please try not to worry.

[Karenn]

Erica,
I'm in the same place you were when you first posted! I've had the test and I'm just waiting for the results. I'm working really hard not to worry, but I can't help it. Last time, the results showed that Colin had a 1 in 7 chance of having Down Syndrome. Then, like Jennifer (JesseandGrace), this all happened over Christmas so it took close to 3 weeks before we had the results from the amnio saying that everything was fine. I was a mess! (And then you can add to that the fact that our sewer line ruptured IN OUR BASEMENT in the middle of it all.) I don't think I've ever cried more in my life.

And yet here I am 3 years later and I made a conscious decision to take the AFP test again? What was I thinking?! I guess like you, I'd rather know ahead of time what lies in store for me. If I'm going to have a baby with special needs, I want to do all that I can ahead of time to prepare for him or her.

Colin is perfectly healthy. I'm praying this baby will be too, but honestly, I won't be surprised if I hear from my doctor tomorrow morning telling me that my numbers are off again. How long did you have to wait for the results of the initial blood draw? (I'm having trouble remembering last time- probably blocked it out!)

I guess I mostly wanted to say I know what you're going through and I'm glad it looks like things are turning out OK! Hang in there!

[jojo2324]

Erica, no experience with this, but best of luck with everything!! Thank goodness you still have a good relationship with your previous OB...I don't think the behavior at your current practice sounds very professional or caring!

Thinking of you, big hugs your way!

[Elilly]

Karen,
The lab that I work at doesn't perform this type of specialized testing so they send it to the Indiana University Medical Center across town. They set them up very early (at about 0500 b/c they take about 6 hrs to run) each morning M-F. I had my blood drawn on Friday and had the results on Monday afternoon. I don't know if all labs do this or not, but IU faxes all of their abnormals first, so the more you wait, maybe the better the news?!
The lab where you had your blood drawn should be able to give you the average turn around time if you call them. If they don't know, ask them who their reference lab is and for that phone number.
Good luck! I know how stressful this is. Remember, that this is only a screening test and there are established cut-offs to show increased risk but that only a very small % of those screens deemed as "positive" ever show anything to be concerned about. I know that I heard this but kept dwelling about if we were the 1 in 400 that was affected. All I can tell you is to eat and sleep and stay busy and positive. Please let me know when you find out your results!
Sending good vibes your way!!!!!

[Karenn]

Erica,
You were right- no news was good news in our case! A nurse called today to tell me that my results came back normal. I was surprised, but pleased! Thanks for your encouragment! I wish had been able to read everyone's comments when I was going through this the first time around! I just might have worried a little less!