Very low papp-a

**DADDY COOL** · November 25th, 2012, 03:35 PM

I accidentally posted this in first trimester, so apologies for doubling up but I am desperate to find help

My wife had an ultrasound at 12 weeks and all the measurements were normal but we were called because the Papp a is very low and so is the free beta hcg

We have been given a 1:62 chance of Downs, a 1:9 chance of Edwards syndrome and a 1:42 chance of Patau syndrome (trisomy 21, 18 and 13)

This is not good news obviously but the odds are still stacked heavily in our favour so I was still quite up beat despite the high risks

However, after our "counselling session" where all my questions were avoided, I was forced onto the internet to seek the answers for myself

The papp a is only 0.08. This is extremely low. The hcg is only 0.2 - also extremely low

I have been horrified to learn that even if the chromosomes are normal, there is a high risk for foetal death, intrauterine growth retardation, cerebral palsy etc

We are now extremely depressed

I cling to the few stories I have found where people ended up having a normal baby despite having low papp a

It looks like it is going to be a hell of a roller coaster ride with scans every 2 weeks to measure the baby. I have read horror stories where poor ladies have watched as the foetus didn't grow and eventually died. This is heart breaking.

I have learned that the papp a is really a screening test and may not mean we will have a miscarriage or retarded baby but again it increases the risks. My understaning is that there is a 1:4 chance of a sad outcome but this is just from internet research which may not be true

I have not found any stories about outcomes for babies with a papp a less than 1.

Does anybody know whether we can have a normal baby with a papp a at 0.08

The blood test was repeated and the second test was the same. Extremely low papp a and hcg

If the baby has a chromosome abnormality, I guess there is a certainty to this and it makes our choice clear. Edwards and Patau babies are extremely deformed and 90% only live 5-15 days. We would terminate the pregancy. We are undecided about a Downs baby

We are scared about having a mentally retarded baby should it survive a preganancy with IUGR

Does anybody know whether you can have a happy outcome with such low placental hormones? Our medical professionals gave us nothing. I am a little angry about the complete lack of information provided to us in our "counselling meeting"

I left thinking that if the baby didn't have a chromosome abnormality, we would be fine and I chose a positive mindset

Since researching papp a on the internet, I am extremely despressed. It seems as if our baby will die or be born retarded. This is extremely upsetting for my wife and I.

I found a clinic in the UK that treats these babies for thrombophyllia with low grade warfarin. I have found other references to aspirin for anticoagulation. This clinic reports good outcomes but we should have started this before 12 weeks apparantly. My wife is about 14 weeks now. I am extremely angry that this information was witheld from us

My wife is scheduled for a CVS in 2 days. We had to wait a week which I gues is reasonable however, with such a low papp a we felt perhaps there would be a better outcome for the baby if this had been done 2 weeks ago when the results came in. We waited a week for the counselling and then another week for the CVS and it seems a window of opportunity may have closed to treat the baby with anticoagulants for thrombophillia of the placenta.

I guess I am looking for something to cling to......some hope........

Can we have a normal baby with a papp a at 0.08 or is it doomed?

- worried dad

**frog** · November 25th, 2012, 03:47 PM

I'm sorry, I have no idea about the outcomes with low Papp a, but I didn't want to read and run. My thoughts are with you both, and I'm so sorry you are having to deal with this worry

Sounds like the counselling session wasn't much help or reassurance at all, can you seek one elsewhere? You deserve to have your questions answered, and honestly. Google can have lots of helpful info, but just as much unhelpful as well...

I hope you are able to get some reassurance and more info to help with your decisions. Wishing for the best outcome for the three of you

**Charlotte91** · November 25th, 2012, 04:00 PM

Google is pretty useless at times.
Same as Frog, I didn't want to read and not post.

I'm sorry you are going through this.

**~TT40~** · November 25th, 2012, 04:02 PM

sorry to hear about your wife and babies results. Unfortunatly I have no personal experience but just couldn't read and not reply. Will be thinking about you and your wife in 2 days time with her CVS and really hoping for better prognosis for your baby.
I hope someone around here has some experience and can help you out.

**diannescruffy** · November 25th, 2012, 04:32 PM

I'm also sorry for what you and your wife are going through. I lost my son, he had Trisomy 13 but we hadn't had any testing so didn't find out until my 20wk ultrasound. An amnio will be able to give you a diagnosis, think at around 18wks, if you have any questions feel free to ask, you will be both in my thoughts.

Regards,
Dianne

**DADDY COOL** · November 25th, 2012, 05:22 PM

I'm also sorry for what you and your wife are going through. I lost my son, he had Trisomy 13 but we hadn't had any testing so didn't find out until my 20wk ultrasound. An amnio will be able to give you a diagnosis, think at around 18wks, if you have any questions feel free to ask, you will be both in my thoughts.

Regards,
Dianne

I'm sorry you lost your son Dianne. I'm guessing we are in for a similar tragedy. It isn't much fun. I hope and pray you were able to have another healthy baby.

Thanks to everybody else for the kind words

**chody47** · November 25th, 2012, 05:24 PM

I am very sorry to hear you are going through this. This pregnancy we also had ver low Papp-a, but ours was a bit higher than yours at about 0.25. Our HCG was also abnormal in the sense it was 2x the average. As a result we were given a 1:59 chance of DS. We chose to have an amino at 18 weeks (which I honestly imagined would be much worse than it was) and we were given the all clear 1 day later. I understand that it is a very stressful and depressing time. Take care and I hope that you get good results. Please let us know how you go. Like you said, the odds are heavily in your favour, so I hope you get some good news soon.

**onthefly** · November 25th, 2012, 06:00 PM

What a shock for you guys!
I think this is one of those times when you really want to get good clinical advice to help guide you and perhaps it might pay to seek a second opinion about what this means and what your options are.

**DADDY COOL** · November 25th, 2012, 11:23 PM

For anybody with low papp-a and normal chromosome tests, consider thrombophillia. Apparently most doctors don't know about it and many premature babies, foetal deaths, retarded babies and cerebral palsy babies can be prevented. Read about thrombophillia here http://www.kofinasperinatal.org/8833...30005056A03A28

Also, a great article about low papp-a here http://www.theovalplanet.com/post.cf...-down-syndrome

We have something to cling to now. If our chromosome tests come back normal, I'm putting my wife on a plane to kofinasperinatal

I'm serously angry that we were not told about this and had our CVS 2 weeks earlier when they diagnosed the low papp-a

Please take action as soon as your result comes back if you get bad news

**melbel** · November 26th, 2012, 04:36 PM

We had a low Papp-a of .24 on our Nuchal test and an overall 1 in 2 chance of DS. I have now have a very normal, very active almost three old in front of me. We also had a very good obstetrician who put us on low dose aspirin and clexane for the rest of the pregnancy and frequent monitoring. Good luck!

**Frangipani Lou** · November 26th, 2012, 07:32 PM

We had low pap a as well and had cvs, let me know id youd like exact numbers. An expert obgyn will be able to see the babies hands on the screen and be able to give you hope about one of the trisomies straight away.
We had all the 'flags' that you are experiencing in our pregnancy and we have a perfectly happy and healthy baby girl who is now 6 1/2 weeks old.
We paid extra for the FISH test when we had the CVS because it gave us results (in 24hours) of the chromosomes affected by trisomy 13,18 and 21 and also told us we were having a girl.
If all is well, I would recommend seeing a nutritionist/ Natropath who specializes in suppliments. It helped us avoid lots of the issues associated with low pap a.
Let me know if you'd like more Info on our experience.
And remember Google Is not your friend.

**chody47** · November 26th, 2012, 07:39 PM

Sorry to hijack the thread - but my Papp-a was about 0.25 this pregnancy. We were told bubs was fine after the amino, but apart from being booked in for an extra scan at 28 weeks (this Wed!) to check growth I've been told not to worry....after reading this I'm now not sure that that is the case. Should I be worried? What should I be doing?

**DADDY COOL** · November 28th, 2012, 10:03 PM

You are probably OK if they haven't asked you to do a CVS

My wife had a CVS yesterday

The results confirmed our worst fears

My little boy has Edwards Syndrome. We are obviously devastated.

Boys with Edwards syndrome usually die before birth and if they survive to term, 90% die in the first 2 weeks of life

My wife is taking it better than I am. I am a mess

We will terminate the pregnancy given the terrible deformities associated with Edwards syndrome and the poor Px with respect to life

Words cannot really express my sadness. Thankyou to everybody for the good wishes

I guess the reality of a papp a under 0.1 being in the lowest one percentile is a pretty grim prognosis.

**frog** · November 28th, 2012, 10:13 PM

I'm so sorry to see that you didn't get the news you were hoping for. I can't even begin to imagine how you both must feel.

My thoughts are with you both, be kind to yourselves and take all the help offered to you to get through it.

**Catastrophic** · November 28th, 2012, 11:14 PM

My thoughts are with you during the time. How incredibly sad for the Both of you. Love and light

**Amaunet** · November 28th, 2012, 11:52 PM

I'm so sorry you are losing your little boy. Having read your story, i was praying for a miracle. Sending you and your wife much love and comfort as you say goodbye.