I feel so p*ed off with the consultant, with dh, with the whole situation, and I need to vent!!!(Long and tedious, sorry, I just need to write down my thoughts...)

[emkana]

You might have come across my other threads - there are some concerns over my unborn baby's health - I'm 27 weeks pregnant.

I'm so p*ed off with the whole situation. First off all with the consultant, which is, I know, completely irrational. It's clearly not his fault. But I feel that he was of the real "doom and gloom" school of doctoring. When I asked him if he could give me an idea of a percentage, how likely it was that our baby has a genetic disorder, he said he couldn't put a figure on it and wouldn't want to give us false hope.
But on the other hand the situation is, as I understand it from researching things on the internet, far from clear-cut! For example he says I have too much amniotic fluid - but looking at the figures on the internet I am at best just above normal level, depending on definiton even within normal range! He didn't say that, though, he just said there was too much fluid. Also, when I challenged him on giving us the biggest measurement for the ventricles in the brain we've had so far, he said there were probably ways of measuring which would give a more reassuring result. But he chose not to go for those measurements but to give us the worst possible result.

The other thing I keep thinking about is that we only find ourselves in this situation because at my local hospital the consultant changed. The old one had seen no need for a referral to a fetal medicine unit, the new one suggested it for our "peace of mind." Ha! If he hadn't been for that referral we wouldn't be worrying ourselves sick now...

also can't stop thinking about the fact that with two scans within 48 hours all the measurements were totally different! So somebody must have measured wrong, but there's no way for me to know who measured right and who measured wrong, but it makes all the difference in terms of prognosis!

And last but not least dh... when I try to share above thoughts with him he's not interested, he thinks I'm deluding myself and in denial, which is probably true, but still...

god how I wish I had never had a scan in the first place, all this wouldn't be happening then.

I mean how likely is it that a fit and healthy woman who has had two healthy children previously, where both her and her dh have no history of genetic disorders in the family, where the amniocentesis came back clear, and where the abnormalities on the ultrasound are mostly borderline, and where the combination of abnormalities doesn't sound like any known genetic disorder... how likely is it that in such a case there is indeed something seriously wrong?
I just can't get my head around it

Sorry to be writing so much, don't really expect any replies, just needed to write my thoughts down.
Thanks to all those of you who managed to read all this drivel.

Emkana, no advice but I can understand you need to write your thoughts down, and I understand what you are saying.

Is there another time soon you will have more measurements taken? Would that help?

Sorry, Em!

Wish I could help.

I think you've stumb;ed into the problems with testing- it can't always be definitive. Is there anyone you can get counselling from to help deal with that- I think its very hard.

Don't be too cross with your dh- he's just preparing himself for the worst. That's just his way of dealing with it. I've found that its best not to talk what ifs (for ds3- even have it done it once before with ds1) with dh because we just end up either winding each other up or panicing each other. I do know though that if we have to end up facing the worst then it's be fine and we'll deal with it (what I mean is that whilst I find it difficult doing what ifs with dh if something happens that we need to deal with then he's great).

Your bit about being fit and healthy etc sounds like anger etc and I recognise it because I;ve felt like that a lot. Just let it flow- and don't do social niceties, lok after yourself and just see people who give you what you need at the moment. You're going through a tough time and its important to be kind to yourself.

The consultant sounds as if he just doesn't know. Doctors do that when they don't know- dwell on the worst, and brush over the best. Just remember though he's saying he doesn't know. In other words it could all turn out to be a horrible nothing in the end (and don't woory of that makes you feel weird as well- that would also be normal).

Look after yourself.

xxx

Oh, Emkana. You are going through some very difficult times. What's your next step now? The consultant should really have been better at communicating the results, it's not as if he had to make any decisions for you but just do what he was supposed to do - give information that you can use.

Sorry to hear what you are going through. Are you due another scan? I wish they could give you some more information so you can make things clearer in your head.

emkana :(
I agree with jimjams - it's your dh's way of dealing with it, and it would be mine too - I need to ave envisaged the worst in order to feel I can cope with something. my dh, on the other hand, would be reacting more like you, and the clash of coping styles would probably make both of us unhappy. Try and recognise it as that - a clash of coping styles, which doesn't mean you can't support each other.
You're going through a very tough time - take good care of yourself. Is there anything nice I could send you from Germany to spoil you a bit?

Emkana - I understand exactly where you're coming from - frustrating isn't it.
Although my experience was nowhere near the same as yours, some of my questions were the similar. They did extra scans on me at the end of my preganancy because I had a small bump. They confirmed that dd was small. Considering that I am only 5'2" and a size 8 and dh is 5'4" and not much wider than me, I thought it was fairly obvious that we would have a small baby!

Thank you all. Foundintranslation - thanks for the offer, can't think of anything atm, but if I do I might contact you.

No counselling was offered to me, but I'm thinking more and more that I should phone the midwife on Monday and ask about it. I just need to talk about this!!! Does anybody know of any organisations I could contact?

your best bet is to have a chat with the PALS service attached to the hospital - they will know about locating the appropriate counselling - though, guess your midwife should know too.

Emkana, I responded on some of your other threads. Your story makes it all come back for me. I had many many scans by as many doctors, each of which gave me a different story, different measurements. dh and I would just about get our heads around one set of results and then the next scan would then knock us for six with a different prognosis. Some doctors were reassuring, others couldn't resist almost rubbing salt in the wound by suggesting an unknown genetic defect (because they had no answer for what they saw and for some reason, needed to cover their backside).

I always believed in my heart that my dd would be alright (although worrier that I was I needed to prepare myself for the worst). I too surfed the net compulsively. Dh's coping mechanism was not get bogged down with details and just dismiss the doctors' doomsday prognoses. I don't think he could have coped with my fears on top of his own (not that he ever went into them).

Emkana, I know this is such a hard time. I hope you know, but even after you have had this baby, the hospital may want to keep an eye on things so it doesn't go away. They also pressured me to have an induction at 40 weeks "for my baby's sake" which ended in an emergency section because dd went into distress as she could not take the contractions! My dd spent 2 weeks in NICU and then SCBU fed through the nose because they needed to monitor her constantly. But they did pick up her hole-in-the-heart for which I am grateful.

It seems that once the scans showed some form of abnormality, the hospital hijacked the pregnancy and birth and the first few weeks of my dd's life. I have often asked myself whether it is really worth all that meddling?

What kind of things did they find in your scans, blueshoes?

Tonight dh and I were actually contemplating whether to go for any more scans etc, whether to actually say no to all this and to just wait and see.

Emkana - I have not experienced the same problems as you regarding measurements , etc. but with DS my GP decided that I was smaller than expected. This started a whole series of appointments and scans made more complicated by the fact that we have a cystic fibriosis risk. I think I encountered as many "I think your measurements are fine" as "Hmm, slightly lower than we would expect". Each appointment (and there were loads) I saw a different consultant/registrar/radiographer and by the time the baby was due I was fraught with anxiety. Well, DS was fine fortunately but the second half of my pregnancy was spoiled by the contradictory opinions of the "professionals". With hindsight I wish I had asked for a second opinion immediately (especially as they were less knowledgable about CF than me).

I really hope everything works out for you. My DH was always reluctant to discuss it in any detail and I attended all appointments on my own or with DD2. His way of dealing with the uncertainty I guess.

What kicked it off were brain cysts at 13 weeks (choriod plexus cysts). The scan at 16 weeks showed possible heart defects (co-arctation of the aorta and VSD/hole-in-the-heart). All along, dd was small for dates, so IUGR was always on their minds. Subsequent scans showed single umbilical cord - which is a soft marker for something I can no longer recall. Had a CVS at 13 weeks which eliminated major chromosomal defects. Turned out dd only had a hole in her heart, but a big one. Her brain cysts were still present at the last scan she had just before birth, but for some reason, the doctors seemed to lose interest in that by then. I was told to prepare for dd to have heart surgery within days of birth if they confirmed co-arctation. This cast a pall over her post-birth period. The doctors took 2 weeks of dithering whilst dd languished in SCBU before someone was brave enough to say conclusively that she did not have that condition and we were free to go home. After dd went home, she finally took to bf-ing like there was no tomorrow.