Severe early Symmetrical IUGR

[pinky30]

I have just been diagnosed with severe early onset symmetrical IUGR at 24 weeks & baby is on 1st percentile and has low fluid. I am terrified about the prognosis as everything i read suggests severe symmetric IUGR comes with a high chance of neurological problems and so even if she makes it through another few weeks to be viable I'm not sure what the outlook is. Does anyone have any experience of symmetrical IUGR? Thank you

[Jumpppy]

Oh no! What awful news 😢 This may be controversial, but have you considered an amniocentesis to see if there are genetic issues at play? May make it easier to foresee what my be ahead?

There is a risk of it sending you into a early labor, but this is actually extremely rare unless there are genetic issues, so long as it's done by a provider who does these all the time. (Risk increases exponentially with providers who perform amnios occasionally as opposed to daily/weekly - so ask.)

Will keep you and your sweet baby in my thoughts and prayers...xxx

[pinky30 in reply to Jumpppy]

Thank you. i know they are going to ask me to do amniotic on Wed which we probably need to do. They did say that it may be tricky though as i have very low amniotic fluid as it is... I think the worry is that with equally small head to body ratio, there is a higher chance of neurological disorders (Cerebral palsy etc) if she did make it far enough to survive... so i'm not sure what they are going to tell me. The outlook doesn't look brilliant at this stage 🙁

[Jumpppy in reply to pinky30]

In theory they could do a CVS, not as accurate but close. I guess the benefit of the amnio is to see if the findings stem from a chromosomal issue or if your body is struggling. The amnio tells you more about whether the lungs are starting to develop and if there is urine output at all or if it's just low. If it's your body I've heard bedrest, lots of hydration, frequent monitoring can result in healthy babies (early - but healthy). My friend had similar diagnosis at 30 wks and her's was early signs of placental abruption - amnio with microarray all clear. They did lots of IVs, bed rest and early delivery. She had multiple amnios to check lung development to optimize delivery. (I pinged her to ask details.) They may be giving you "risks" right now rather than probabilities. Most concerning is the growth TBH 😞

I've been through amnios and a CVS - personally it was helpful to know whether I was potentially dealing with a chromosomal issue as early as possible. For me it helped in decision-making and assisted the perinatalologists in making any relevant treatment decisions...they definitely differ based on the cause.

Keep that hydration up, just in case. Keeps spirits and hope up warrior!

Thoughts and prayer and lots of good vibes coming your way 😀 xxx

[pinky30 in reply to Jumpppy]

Thank you - that's really great advice. I feel you are right and we have to go for amino somehow. i need to somehow get my body to up its amniotic fluid to enable them to do it...

That's so helpful to understand - thank you so much 🙏♥️

It's so crazy to feel her moving about inside me but to know she's not growing properly 🙁 And so frustrating to think she was a tested embryo and completely clear on Harmony results. but i guess chromosomes can change in development.. 🤷‍♀️

Thank you so much for your help and advice - i feel like i know the direction I need to move in xx

[JulseyP]

My daughter was symmetrically IUGR diagnosed at 20 weeks. Had a planned c section at 37 weeks where she was born on the 0.08th centile. Only long term effect is that she has never caught up. Neurologically, she is developmentally normal-advanced and as bright as a button.

Fetal medicine will likely offer lots of tests to find out why. We turned down amniocentesis as it comes with risks and the only option is termination if they find anything which was not an option for us. They can do some genetic testing through testing cells in your blood but this is not offered on the nhs yet but can be done privately its called NIPT and is worth talking to your dr about.

Try not to Dr google and take each day as it comes. I'm not going to lie the pregnancy was soooo stressful and I might as well have moved into the hospital but that was because she didn't move either.

Keeping fingers crossed for you

Message me if you want to talk more

[pinky30 in reply to JulseyP]

Thank you so so much for replying. I will message you if that's ok to try and understand more... xxx

[Jumpppy in reply to JulseyP]

JulseyP they told you if they found a chromosomal issue via the amnio that they would require (only option was) termination? If so that is awful and I might not get an amnio if someone told me that. I've not heard that before and I can'timaginehow that would ever be OK to say to a woman. I agree that you might want to think twice about knowing if the knowledge will result in care not being given. They can of offer "care" for these scenarios and they should offer it no matter what an amnio finds. An amnio should only be used to help direct care not to force a "decision."

If pinky30 you do an amnio ensure your care team have the right mindset and definitely don't let them withhold the care you want - you absolutely have the right to make decisions for yourself and your body, whatever that might be.

JulseyP So glad to hear your story like my friend's resulted in no issue (other than behind in growth) 😀

[pinky30 in reply to JulseyP]

wow - is that right ? They would have forced termination if they found an issue?

[JulseyP in reply to pinky30]

Sorry I think you miss understood. There was nothing which would have changed the management in pregnancy to help the baby. All that amnio would have done would have told if there was a genetic problem which would mean we could terminate of we wanted to. As we had no intention of terminating no matter the result we felt it was better to do the genetic testing after birth so we would still have answers but not put the baby at risk getting them. This would not alter the support the baby would have after birth had there been a genetic issue.

[pinky30 in reply to JulseyP]

Ahh ok - makes sense... xx

[AuroraXen]

I don't have any advice or words of wisdom Lovely, but I'm so sorry you're having to deal with this stress and uncertainty. I hope things turn out OK. The stories above show all can be well 🙏 and the posters have given great advice. My thoughts and prayers are with you Pinky xx

[pinky30 in reply to AuroraXen]

Thank you for your kind words x

[Eternalwarrior]

Hello lovely

I am so sorry you are growing through this. I had a similar situation when I was pregnant with my son and he wasn’t growing properly and we had IUGR pretty much throughout the whole pregnancy. My son was a PGT-A tested embryo and then on the 12 week scan we were told he was high risk for Downs Syndrome. We did the NIPT and that came back clear so we decided not to do the amniocentesis (I had already lost another baby in the second trimester and suffered recurrent miscarriages).

We had lots of scans and monitoring and he was born a bit earlier than anticipated and was on the 3rd percentile but he is a healthy baby, so I hope this gives you some hope. If you need to talk, please feel free to message me xxx

Thinking of you and sending you all my best wishes xxx

[pinky30 in reply to Eternalwarrior]

thank you do much for your reply. I will drop you a message.. xx