Anyone suffered with severe IUGR?

[Ironytheoppositeofwrinkly]

As the title suggests, my beautiful little rainbow girl has had a diagnosis for some weeks now of severe early onset iugr. I have looked online, and can't seem to find any cases that are as severe as what I'm experiencing. For reference, I am 27+2 today, but my baby is below the 1st centile, measuring at only 20ish weeks, and weighing just over 13oz. I'm just looking for any similar stories, regardless of good or bad outcome.

I have iugr (3rd time), but was below 4th centile at 32 weeks. Just didn’t want to read and run as I understand a little of what you must be going through. Are you getting lots of monitoring? What does your consultant advise? Hope you’re getting lots of support from your midwife at this time although it really is just a waiting game isn’t it?

That's quite significant. What are the clinicians suggesting? Have they offered you an amniocentesis test? What's the plan?

Sorry to hear you're going through this.

I've had an amniocentesis, it came back completely clear. Yes, my consultant at the Fetal Medicine Unit has said he thinks there's an extremely slim chance of my baby making it, was just looking for others experiences of it too, trying to get my head around it.

They've slowed down the monitoring, I think because she's not gaining any weight. They can't really suggest anything as there isn't a cure for IUGR.

I'm so sorry you're going through this.
Hopefully someone will be along soon with their own experiences. I wish I could be more helpful.

Thank you. I just don't think I can quite wrap my head around the fact that she's probably not going to make it when she's hung on this far. I have oligohydramnios too, which really isn't helping.

@Ironytheoppositeofwrinkly I am so sorry you are going through this. That's just awful.
Are they not even suggesting steroids and delivery? From what you have said it sounds like the placenta is struggling. If she's not growing at all surely someone has to decide to do something? Or are they just planning to let you continue as you are?
I'm sorry I can't be more helpful. Here to listen to you any time you wish.

I second what @Miami81 says, any reason why they haven't offered steroids and delivery? At 27+2 your little girl is viable and the doctors would be obliged to do everything in their power to keep her alive once delivered.

At 27+2 your little girl is viable

Baby only weighs 360g or so though. A baby has survived when born at that weight but the odds are stacked against it.

I really don't think people online should be second guessing an extremely complex high risk case being managed by a consultant. Delivering the baby at this stage will have occurred to them as an option.

It sounds like you’re in a very difficult position. Would it be worth visiting your GP to talk about setting up some counselling? It might help to have someone to talk your feelings and emotions through with over the next few days/ weeks/ months- whatever happens

A baby is viable at 24 weeks if they weigh that of a 24 week baby. And even then, the outcomes are not good.

A baby at 20 weeks unfortunately is not viable and steroid injections for their lungs won't make it so.

Sorry that was supposed to say a baby at 20 weeks gestational weight.

I was diagnosed at 26 weeks and admitted as an inpatient. They gave me steroids to nature ds lungs and held off delivering until 36 weeks, he weighed 800gms at birth though. Had a very tricky first year but went in to do very well.
I’m so sorry you are going through this OP, it’s incredibly stressful. Are they giving you aspirin? I took that in my subsequent pregnancies to stop the same thing happening again.

Sorry should have said he was delivered at 30 weeks not 36!! Silly phone.

I'm already on clexane. My consultant isn't willing to deliver her at the weight she is, she weighs 372g atm. He wants her at a minimum of 600g, which sounds very achievable, except she weighed 237g at 23 weeks, so she's really not gaining. They don't know if her lungs have even developed properly, so although they've said if she's still alive at 30 weeks they will give me steroids, they're not actually sure if they'll work.

Also, being admitted to hospital isn't an option, as I have a 7yr old son at home, and my partner cannot afford to have much time off, as he is the sole wage earner.

I'm so sorry @Ironytheoppositeofwrinkly and I apologise if my earlier post caused you any more upset then you are already experiencing. I hadn't realised that there is an ideal weight that they would want the baby to get to prior to delivery.
Even incremental growth must count in your case, hopefully she makes some small progress in the next while.

miami81 don't be silly, any advice is appreciated, it shows you're trying to help! Only advice that grates on me is 'everything will be alright' 🙄 makes me want to scream.

@Ironytheoppositeofwrinkly I wonder if it's worth getting in touch with Tommy's the baby charity. They are doing research all the time and they may have a trial of something at the moment that could make a difference. Or if not at least you will feel like you have asked other professionals the hard questions.
There is a midwives helpline number and they are absolutely lovely.
All of there research is about prematurity, stillbirth, IUGR etc and they are working so hard to save lives.
We lost our little girl last year through some kind of placental complication (seems like clots) and have been referred to Tommy's Manchester rainbow clinic for extra care in our current pregnancy. I know that there are other clinics around the country that specialise in other aspects of pregnancy.
And remember every day you are pregnant makes a difference. Your girl is fighting away and I know it must feel like you have nowhere to turn, but honestly maybe saying some of it out loud will help.

I remember you telling me about her miami earlier in my pregnancy when we were old she had other issues that unfortunately weren't compatible with life, although thank god, they turned out to be wrong.
This is how I'm dealing with it, one day at a time and every day she's in there I know she gets a tiny, tiny bit bigger and stronger. Luckily my umbilical artery flow is pretty damn spot on, so they're completely at a loss as to why she's not growing.
I definitely could use a place to vent atm, especially as a rather close friend of mine who knows exactly what we're going through has just done her gender reveal of her perfectly healthy baby girl, and has decided it's appropriate to 'grieve' for the little boy she wanted. She's posted a RIP message for 'him' along with his chosen name etc. I literally want to wring her stupid fucking neck tbh.

I had IUGR and ogliohydraminous in my first pregnancy, too. It was luckily late onset (I think) as wasn't picked up at 20 week scan. I noticed my bump wasn't very big and I started measuring behind, 4 weeks behind at 36 weeks but still the MW didn't flag it or send me for further investigations. At 38+4 in the evening her movements were different. She was moving, but slow, sluggish and I knew something wasn't right. Went to FMU, they measured me and were like 😳 and then tried to find her HB, took them ages but found it then sent me for scan due to my measurement and reduced movement. Her deepest pool of amniotic fluid was 1cm, she was estimated to be 6lb and blood flow through the placenta was poor. Was admitted immediately for induction and low threshold caesarean if she didn't tolerate labour. My story ends well as she tolerated labour okay, was born weighing 5lb but my placenta was in a really bad way. MW said I did the right thing coming in when I did as the outcome could have been very different.
I'm really so sad for you that your little one has such early onset IUGR. I'm hoping that baby puts on enough weight to be delivered and have a good chance. They're already a little fighter, having come this far! You're in my thoughts.. x

Thank you gemsie me too. Some days I am more hopeful than others. I'm doing all I can, I drink 3L+ a day, I'm on a ridiculously high protein diet, I drink 1L of milk a day, so surely she's got to struggle on and put some weight on?!

OP I'm wishing you the best. I have no doubt your consultant will do everything in their power to help your baby, I know from experience how much they care. I'm so sorry you're going through this. Fingers crossed for your little girl.

Yeah I know that, it's their job at the end of the day. I can't help but worry every single minute of the day though, it's driving me absolutely insane.

I know this is an old post but am going through the same thing and wondered what your outcome was Ironytheoppositeofwrinkly?