Need some help please

[sad73]

Hi, I have changed my name here because I don't know what to do or think at the moment. We had a 12 week scan yesterday and it was clear from the beginning all was not well.

The experienced doc said that the fetus had abnormalities as severe as he had seen in 5 years of scanning. There was a heartbeat and he waved at us but the doc said that there was a seriously distended bowel region with unknown inclusions. He said the abdominal region was out of proportion and there was not enough room for lung development, lower limbs were abnormal and the umbilical cord was joined at the buttock region.

His recommendation to us is to have a cvs for us not for our baby. So we know if this is likely to be a known problem that could reoccur. He stated that he did not think this pregnancy was viable and that if we choose to do nothing then 'nature would take it's course'. If nothing happens before the CVS he recommended a termination as carrying longer would be worse for me (though he didn't use those words).

I think we will do the CVS. But I'm unsure after that. This was a much wanted baby the idea of terminating with a heartbeat sickens me. As with all medicine, he can't be certain our baby won't make it to term but delivering a stillborn baby at 28 weeks would be terrible. I just don't know what to think, with no guarantees. I also slightly wonder given the nature of his profession whether he would always err on the "this baby has no chance, you should probably terminate" option.

Any advice?

Oh, I'm really sorry to post here if it's inappropriate. The pregnancy topic seemed worse, I just couldn't decide.

Just wanted to say how sorry I am for you. How awful. I couldn't possible give you any advice, this is the sort of decision you would need to make with your DH/family.

Do you have support. I have not been through this but you will get support of MN whatever you decide. Sending you big hugs. x

So sorry, what a horrible and confusing situation. I do not have any words of wisdom, but I hope someone will be along soon who does. You are in my thoughts. X

www.arc-uk.org might be a helpful site

i am so sorry you are in this awful predicament. i have no personal experience, but just want to offer some support

if the pregnancy is not going to carry on , or if you reached term and the baby's abnormalities are incompatible with life, then maybe a termination is the right course of action? i don;t know, it is a terrible decision.

even if your baby has heartbeat now, life outside the womb might not be possible

i very much doubt that you are being told to terminate as a way of the docs erring on the side of caution, especially if his opinion is that the severity is so severe.

ultimately, it is yours and your Dhs choice.

i wish i knew what to say, i am very sorry and i hope you are getting lots of real life support

FWIW a friend's sisters first pregnancy had to be terminated due to abnormalities that were incpmpatible with life, and she has since gone on to have two more healthy children.

Thanks very much for your kind words.

I should say I have a DD so I'm very lucky in other ways though we hope to have more children.

I think the problems are:

I'm very sad that it looks like this baby won't make it.

I feel uncomfortable with a decision to terminate (it seems so huge). Deciding to do nothing feels better yet I'm a very private person IRL and obviously I would have to tell lots of people (inc work) about this since the chance would be high that my baby will die before term.

The idea of having a still birth is very upsetting to me (and I guess any normal person).

It seems so counter intuitive to terminate because we wanted this baby. Based on the 2 scans so far, my partner thinks the least awful option is to terminate, though he wouldn't object if I disagree.

I'm frightened of the termination procedure, which ever one they suggest. I know this sounds pathetic. I' m not sure what they would want to do, I guess I would be between 13 and a half and 15 weeks by this stage.

I've been iller in this pregnancy (coughs, colds and morning sickness) than in the last few years, and I feel responsible.

Sorry for going on, I have a lovely supportive partner but talking about it IRL makes it too real at the mo.

I guess we'll do the CVS and see what happens after that.

it must be awful, there will be no good outcome here...you are not responsible, being ill in your pregnancy will not have made a difference.. these things are ususally chromosomal (?) and nothing you did or didn;t do is responsible.

is there someone at the hospital you could talk to? there might be a specific midife who deals with this , and can counsel you in your decision.

i don;t know if termination or waiting for your body to end the pregnancy would be easier, i doubt either decision will be easy

be kind to yourself, this is a terrible situation. i hope that someone with some experience can offer their personal story.

I'm so sorry for you.

I have lost a baby at 20 weeks and had an early miscarriage. As hard as they both are the first was alot more drumatic.

I agree with lulu that I do not think the dr would recommend termination unless sure but for your own piece of mind you could ask for 2nd opinion. Any Dr would understand you having the need for this. I'm not saying that the dr maybe wrong but I know from personal experience once the baby is delivered you'll have alot of what if's. It's going to be difficult what ever you decide.

My heart is with you.

Thanks again for your replies, it kind of helps to put it down.

Thank you very much catzy for sharing your story. That must have been really hard for you. One reason to intervene rather than let nature do its thing is I don't think I can bare other peoples grief or upset in addition to my own/my partners. I know I sound like a fruit cake! My parents are very close to me and would be very upset but would also not be able to help themselves making the observation "well if there was something wrong with it......."

I will go to the hospital next week for the cvs. I think at least one other doctor may also be present as this is an unusual case. Should give me some idea if he/she thinks the prognosis is as bad. I sort of wonder if the cvs is as much for their benefit as ours. I know that sounds nasty but it isn't meant to be. Actually I understand their desire to know more and have neat explanations for things.

I doubt that the CVS will tell us much, the conditions that they generally test for have known pathologies but they may ask for extra ones.

Thanks again for your thoughts.

So sorry, sad73. Mt first baby was diagnosed with anencephaly at 21 weeks. She was a very much wanted and loved baby, and we were devastated by the news. We chose to have an induced delivery (I hate the word termination in this circumstance, and can't bring myself to say it). I don't regret the decision, though I'd never imagined myself doing it, and signing the form just about broke my heart.
I wanted to at least try to answer all your points:
I'm very sad that it looks like this baby won't make it.
It is awful and heartbreaking - in some ways it was easier for us, because it was so obvious, even to us, from the scan that she had no hope of survival. What you are going through is extraordinarily hard.

I feel uncomfortable with a decision to terminate (it seems so huge). Deciding to do nothing feels better yet I'm a very private person IRL and obviously I would have to tell lots of people (inc work) about this since the chance would be high that my baby will die before term.
I completely understand your desire to not talk about this in real life. That was exactly my reaction - I wrote to work essentially saying that, and people did respect my wishes. There is a useful leaflet from ARC which will help you if you choose to continue - there's also one if you choose to terminate, and ARC in general will provide you with lots of support.

The idea of having a still birth is very upsetting to me (and I guess any normal person).
Before I delivered my daughter I could not understand how anyone could survive delivering a stillborn baby. I dreaded delivering my daughter, but it was not as bad as I feared - it was terribly sad, but there were moments of just amazing joy as we held our tiny girl and said goodbye. I still remember it with peace and a smile.

It seems so counter intuitive to terminate because we wanted this baby. Based on the 2 scans so far, my partner thinks the least awful option is to terminate, though he wouldn't object if I disagree.

I absolutely understand this - I could never have imagined having a termination. For what it's worth, I don't feel guilty about it, and I've thought it through long and hard ever since. I miss my daughter so much still, though her little sister has proved a great distraction. P is, and always will be part of our family. Whether you deliver your little one early, or carry on with your pregnancy, this little one will always be your baby, and carried in your heart.

I'm frightened of the termination procedure, which ever one they suggest. I know this sounds pathetic. I' m not sure what they would want to do, I guess I would be between 13 and a half and 15 weeks by this stage.

It doesn't sound the slightest bit pathetic. It sounds normal and reasonable. I only have experience of induced delivery, and in the end it was a dignified and peaceful occasion, which brought us peace and joy amongst the sorrow. I hope someone else can tell you about the other procedures.

I've been iller in this pregnancy (coughs, colds and morning sickness) than in the last few years, and I feel responsible.
I've thought about this a lot - neural tube defects are linked to low folic acid, and I was a bit slapdash about taking fa, in hindsight. But really it's just plain bad luck - these things are so rare it is impossible to predict who it will happen to and why. You didn't set out to harm your child - you had very very bad luck. The chance of any of your illnesses causing the disorder is very small - I hope the CVS sets your mind at rest for this.

Sorry for going on, I have a lovely supportive partner but talking about it IRL makes it too real at the mo.

Go on all you like. Talking this through, in all its minutiae, is part of the process of dealing with it. It's important, and there are many many people here who understand.

I guess we'll do the CVS and see what happens after that.

I hope you get some answers which will bring you some peace and comfort. Will be thinking of you. Would also recommend the SANDS forum for support, both now and in the time to come.

Dear Sad73, I am very sorry to hear what you are going through. I have to go out now so cannot post much at the moment but just wanted to say I have been through similar. We found out at a nuchal scan at 12 weeks that our baby had a condition that was incompatible with life. We also had a CVS to determine if we had a genetic problem. As others have said ARC is fantastic. Take care

we decided to terminate at 21 weeks - my waters had completely gone at 18 weeks and there was no possibility of lung development - that plus almost inevitable extreme prematurity combined made our minds up (although i feel that even now i am trying to justify our decision to end the pregnncy rather than 'wait and see'). i am also a very private person in rl - i haven't told anyone that we ended the pregnancy - as far as people who knew (and there weren't that many - we had kept the pregnacy quiet) were concerned we 'lost the baby'. I was weighed down with guilt tbh but we had a wonderful consultant who refused to let me say that i had ended the pregnancy. 4 years later i feel that we did the right thing - we had a 27 weeker 2 years later and her time in SCBU was enough to show me that our little boy would have suffered enormously even if he had made it through birth. i have also suffered several earlier miscarriages - my 21 weeker was significantly more emotionally difficult to deal with than those (12, 14 and 9 weeks)as i actually had to give birth. However the upside was that i did get to hold our son and we have pictures of him - all very precious to me.
it is quite the worst time ever - i hope you come to the right decision for you and wish you much peace in the future.

no experience, but wanted to lend my support to you and say that what you are facing is an incredibly, sad, and unimaginably difficult decision .

Wishing you strength in the coming weeks.

I echo what many have siad.

But also wanted to add to try to take small steps. Have the CVS then decide the next step and so on. Just try to deal with the immediate issue iyswim.

As many have said this is an incredibly difficult situation and you are right to take your time to find out the best option for you and your DP.

I had 2 m/c in early pregnancy and know how horrible it is to lose a baby, but the dilemma you are facing is much worse.

When I had my first m/c the "care" I received was bad, to put it mildly and it took me a long time to get over the guilt. The doc was very short with me when I had the scan, she said, "oh, there is no heartbeat. Shame, but it does happen quite often at this stage. I will book you in for a D&C this afternoon."

As everything happened so fast, I did not have time to think things through. I also felt guilty afterwards, what if she had made a mistake and there was a heartbeat.

I believe that the likelihood of a doctor making a mistake of this magnitude is quite slim, but it haunted me for a long time.

When I had the 2nd m/c I asked in the hospital if they would give me an extra scan (explaining what had happened the first time and how traumatic it was for me) and they were great about it. They got the consultant to come in and have a word with me and he did the scan.

Please do not torture yourself with thoughts of things that you might have done/not done that has caused this. Some women do not know that they are pregnant until much later in pregnancy and drink/smoke/party all night and still give birth to healthy babies.

I hope that you and your DP come to a decision that is right for you. Take care.

Hi, Just thought I'd update. Mainly to say thanks for all the advice especially to those sharing very personal stories but also to say how things went.

Well I had some more scans and the CVS. The scans were no improvement. In fact if anything, a bit more depressing. No kidneys present. The cysts were all still there and the bowel swelling had increased. The lower limbs looked different and fluid was detected round the heart (the Dr said it was being crushed by the bowel swelling). I opted for a termination. I checked with another dr that he doesn't advise a termination for any sort of disability.

CVS showed nothing (no surprise as only looked for t13, 18 and 21).

I found the termination quite stressful and sad. Physically I seem fine but I do feel like I took the cowards way out despite the consultant saying he had never seen a baby make it to term with the problems our baby had. After all, you never know and now I'll never know. Anyway I hope we can try again, I feel a bit burned.

Any way thanks for all of your advice. It really helps. I'm sorry these sad things happen to anyone but I'm glad some of you didn't mind telling me about them.

oh sad73 what a terrible loss for you and your family. do take the time to get over this and be kind to yourself. please don't try to recover from this too quickly it is a very genuine traumatic loss you been through and you've been so brave to post on here

I hope you receive all the love and support you deserve and wish you all the very best for your recovery both physically and emotionally