Monday, November 16, 2009

Ultrasound Update

It's been a week, and after much prayer, some research and an easier decision than I expected, we are now ready to fill the rest of the "world" in on what we discovered during our ultrasound.

As I mentioned in my original post. Audrey looks beautiful and perfect - she moved tons during the ultrasound which is always fun :~) However, they did find something in/on my amniotic sac that was of some concern.
Originally the technician labeled it "amniotic band ?"

During our appointment with or OB, he told us what they had found and that he has seen 6 or so of these in his career and while they all turned out normal without complications, they can have serious risks associated with them - including amputation of an extremity. He also said that he would like to send us to a specialist to confirm/diagnose what they found, but if that was what it was there is nothing that can be done to correct or prevent it if something were to happen. He mentioned one other thing that it could possibly be, which they were able to rule out due to a normal/healthy baby at 20 gestational weeks.
As you can imagine, we were a little taken back by what he was saying. To say that we were confused would be a complete understatement.
The only questions I remember asking were (1) Are you sure that's what it is? (2) Could this be related to the Asherman's that I had and the scar tissue that is still there?
To both questions, he answered "no".

I am so thankful that Tim was with me, because he did think to ask "where is it?" and the doctor showed us (via a drawing) where it was located in the upper right hand corner.

We left the doctors office both confused and scared... but mostly just confused. I cried most the way home.

I did manage to call my mom on our way home, to have her start finding anything she could on Amniotic Bands; by dinner time she had called me back and with a reassuring voice told me "Amber, I don't think that that is what you have".

At this point I could bore all of you with a lot of medical information and jargon that you could care less about... but I won't. To put it as simply as I can the information that both my mom and I have found in the last week:
~ Amniotic Band Syndrome occurs in 1 out of 1200 live births (.08%) it is almost always diagnosed when a abnormality or deformity of the fetus is detected during an ultrasound. Rarely is it diagnosed without this. In the cases that they are detected in the sac without attachment to the baby these cases almost always end without any further complication to mother or baby, usually disappearing entirely. When found there is usually more than one. And most of your severe problems typically occur during the first trimester (which is why they are normally diagnosed at a routine 20-week u/s).
~ Amniotic Sheets (note the difference), however, are more common occurring in 1 out of 200 live births (.6%) and are more common in women who have had D&Cs and/or infection/scarring of the uterus (Having a severe case of Asherman's Syndrome, including some scarring that we were unable to get rid of... in the upper right hand corner of my uterus would qualify). An amniotic sheet (a.k.a. fold) is thought to occur when the membranes "fold over" or attach to existing scar tissue. What this basically means is smaller living space for baby girl to grow and live in. There are no real great risks to baby. Highest risks include preterm labor (before 37 weeks), low birth rate, and increased chance of c-section due to baby not presenting properly (head down).

These are the two possibilities that we have found, plus a few other ones which can be ruled out because of lack of other symptoms or abnormalities of baby.

Obviously, since we have done some research on our own, we have spoken to our doctor's office, I have actually spoken to an ultrasound technician as well as my doctor's nurse who relayed between my doctor and I. They have told us that there is no way that it could be the sheets, when I asked them why, they have only said that the bands are much more common, which I have not found anywhere to confirm. I have also asked of other possibilities of what it could be, to which they will NOT give me an answer, saying only that I needed to see the specialists. They have also confirmed, several times, that if it were the bands there is nothing other than monitoring that they can do for me.
My number one question for them has been: is there anything that it could be that is treatable? to which they have also NOT given me an answer too, but only replied that I would need to see the specialist.

Seriously now, I am not trying to rip on our doctor, I actually really like him, but I am struggling in this situation! I feel completely uninformed and have received some obvious mistatements from their office and even when I ask them direct questions I am always pushed to see the specialists and undergo more ultrasounds and test... after which he still may not even be able to diagnose what they find (told to me by my doctor's office). My other struggle is that when I have specifically asked about the Asherman's Syndrome in relation to this they completely rule it out as a factor which is clearly not accurate. Amniotic Sheets are a known risk in pregnancies following any scarring of the uterus (not to mention complete obliteration of).

Now, I will be the first to admit that I have no medical degree or expertise, and have no way of properly self-diagnosing.... but with the information I have found and the medical history that I not only know but lived through - I am more than comfortable with believing that I have amniotic sheets, and not amniotic bands.

The truth is, regardless of what it is, there is nothing medically that can be done, to prevent any problems from occurring. We do plan on monitoring as best we can (with at least one more ultrasound later in the pregnancy). With all this in mind and the peace of God guiding us, we have decided to NOT proceed with the specialist. God has given us an unexplainable peace about not needing a diagnosis, and in a step of faith we are trusting Him to be the protector and ultimate Physician to precious Audrey.

We would appreciate your continued prayers for this pregnancy, ultimately we believe that Audrey and our entire family rest in the sovereign hands of God and that He will work out all things together for our good.... regardless of what that may look like, we trust Him.

1 comment:

greeneyedmom said...

My sister's friend was told the same thing and her baby turned out fine.

I remember I read a Nicholas Sparks book where someone was pregnant and had this. Their baby also turned out fine, granted that's fiction. I can't remember the name, I've read a lot of Sparks and they all blur together after awhile.

I'll keep praying for you and Audry!