My IUGR story so far…

[mark730]

Posting to share my story and see if others have had similar experiences and how it turned out. 25+1 FTM.

We were diagnosed asymmetric IUGR at the 6th percentile at 24+1. Baby is weighing 543g, his abdomen and head look fine but arms and legs are tiny, in the >1%. Negative NIPT results, no history of genetic or chromosomal disorders in our families, and neither myself nor my fiancé are particularly small. Blood pressures are normal with no signs of preeclampsia thus far.

Cord dopplers are elevated between 5-6, baby’s BPP passed with flying colors. Amniotic fluid is fine. Slightly elevated MSAFP. Most likely cause is placental insufficiency. 20 week anatomy scan and f/u ultrasounds ruled out ONTD.

We’re doing weekly cord dopplers, growth scans every three weeks, and weekly NST starting at 28 weeks.

At this point we’re keeping our fingers crossed that he is just tiny and that I can carry him as close to term as possible. Goal is 36 weeks. We’ve declined the amniocentesis, I’m worried about the risks outweighing the benefits, and I think more genetic testing would just cause our already high anxiety to skyrocket. It would not change our outcome prior to delivery.

Thoughts, suggestions, similar experiences? My MFM doctor has basically only recommended more rest but not complete bed rest. She said if we start to see absent or reversed flow on the dopplers they will admit me for observation. I’m trying to stay as calm as possible, we’ve been freaking out since the elevated MSAFP at 21ish weeks. Part of me feels like they have stolen the joy from my pregnancy that could end up totally normal in the long run.

 

[samanthamathis]

@mark730 Unfortunately, probably not the story you want to hear. My baby got diagnosed IUGR at 31 weeks. Dopplers were completely fine. He passed his BPP on 2/12 with flying colors. I went to my BPP with Dopplers on Valentine's Day at 33+4. I was feeling reduced fetal movement and it took him a long time to pass his BPP. Doppler showed cord flow was intermittently absent. I was sent to L&D. His fetal monitoring strips were concerning and my OB had me back for c-section in 2 hours.

It happened very fast for me and unfortunately everything I read indicated IUGR diagnosed before 32 weeks (early onset fetal growth restriction) is much less likely to make it to term that IUGR diagnosed after 32 weeks and that was my experience.

It isn't all bad, though. I almost made it to 34 weeks, which is a huge milestone. I got both steroid doses. He was born 3 lbs 2 oz and needed a 26 day NICU stay but never required respiratory support, not even a cannula. His APGARS were 8 and 8. IUGR babies are tiny but mighty and tend to do much better outside than they did inside.

My best advise is listen to your body. If you think something is wrong don't talk yourself out of going to for monitoring. It sucks and this diagnosis does kind of steal your joy. Every appointment was a potential hospital admission for me, and I was admitted a couple of times before he was born.

 

[pupscout]

@samanthamathis I can’t agree more with the listening to yourself. I can’t tell you how many times I tried talking myself out of going and my husband was the one to make us go in just in case. And it was always the right thing to do.

 

[mark730]

@samanthamathis Thank you for sharing, 34 weeks is great from what I’ve been reading about early IUGR! I’m so happy your little guy has a success story despite the challenges.

 

[2459grace]

@mark730 I had an IUGR baby at 33 weeks and it wasn’t found until the day I delivered. I delivered because baby had reverse flow. Thankfully, I was already in the hospital with pre e being monitored so I already had the steroid shots. Baby came out crying and we were able to do delayed cord clamping. She only weighed 2lbs 15 oz. She was on cannula for less than a day. Our NICU stay was 31 days and baby was a feeder/grower for the whole stay. No major issues. Good luck

 

[nscr]

@mark730 Hello!

My now 2 year old was an IUGR Bub. At my 20 week scan they raised concerns that she was small for dates, so we had to do a follow up 3 weeks later. She was still small, but growing at a “normal” rate. Everything else seemed fine except for her size. She remained in the low percentiles my entire pregnancy and she’s still only 10.5kg at 2y3m.

I don’t recall all of my statistics - I live in Aus and had a private obstetrician so I had almost weekly scans from around 26 weeks until I delivered her via c section at 34w5d. I also refused I amniocentesis because it wouldn’t have changed anything for us either.

My placenta was tested, my daughter is perfectly fine (just small and needed NICU for breathing then feeding and growing) and I didn’t do drugs or alcohol while I was pregnant so the reason behind her IUGR is still a mystery. Stevie was 4lb at birth and her head circumference was in the 2nd percentile - while I’m not small in stature (in 176cm and my husband is 188cm), I do have a small head circumference as does my mum, sister and niece. My daughter’s medical team were always more concerned about her size and especially head size than I ever was.

My pregnancy was a really scary time, especially after I got Stevie’s IUGR diagnosis and my ob went over risks and options with me. I had recently lost my Dad and a nephew so I was in the thick of grief while also feeling like the one glimmer of hope I had might not be ok. I remember after one appointment getting into my car and just howling… it was the first appointment I’d told my husband I was ok to do on my own and I wish that I hadn’t. The glimmer is now a singing, dancing, cheeky pocket rocket. She’s the smallest in her room at daycare but probably has the biggest attitude

It sounds like you ha e great medical care - I don’t have any advice, just experience as an IUGR mum who’s daughter is kicking all of the goals.

Wishing the best for the rest of your pregnancy and beyond

 

[mark730]

@nscr Thank you so much for sharing! I love these success stories, they help me to feel so much more positive.

 

[ryanmrozek]

@mark730 I sent you a private message. Also rooting for you and your babies!

 

[jerrhhhhli]

@mark730 Hi, one of my twins was IUGR as well. And stage 2 TTTS (transfusion syndrome, usually between Mo-Di twins).

The first time we were diagnosed with thud was at 13 weeks, but it was so early, they didn't know which of the two problems is that major one. We went week by week and had many ups and downs but twin B for sure was a fight (and still is!). I got my steroids shots at week 30 and they were born at week 32+4 via c-section, she had 1045g, her twin sister had 1745g. We stayed in NICU for close to 6 weeks. She had many bradys and gaining weight went slow.

She is 2,5yo now, super healthy but still small compared to her twin sister. She hit the 3rd percentile a few months ago. But as everything is fine developmentally, no one is concerned any more. She is petite and that's it

But we leaned the hard way that IUGR babies are way more affected by viruses than bigger babies! We had to go back to hospital two times in the first 4 months due to RSV, back to cpap, back to infusions, back to bradys...

 

[mark730]

@jerrhhhhli Thank you so much for sharing. It sounds like it’s been a scary road but ultimately your little ones are healthy and that’s what we’re aiming for. These stories give me glimmers of hope!

 

[jerrhhhhli]

@mark730 I wish you all the best and please feel free to DM me anytime! Its scary, its frustrating, but as others put it: tiny does not mean weak

When we had to go in with RSV the first time, it took two adult nurses to hold her down so they could do the intravenous aditus. She was fighting so much, she even ruptured her hernia. It was unbelievable!!! She was one of those babies that always pulled out her feeding tube, intravenous infusions etc. She hated all those cables and tubes so much.

Nowadays, she is still very headstrong and super hilarious. We are laughing so much. She and her twin are an amazing team and all three girls have a very strong bond and are prone to mischief. But mostly in a cute way. They are super active climbers and our kindergarten staff is always telling us they will all become stuntwomen

 

[beyoutifuloutlaw]

@mark730 Had my IUGR baby at 38 weeks and and the IUGR was not found until after I gave birth. Baby was 3lbs 9oz, measuring at around 32 weeks. She was in the NICU for growth until she hit 4lbs for 15 days. She’s now almost 6 months and up to par with weight and size for other babies her age!

 

[jennifergryph]

@mark730 My now 4 year old was asymmetric iugr. Diagnosed at just shy of 28 weeks (didn't have any scans between 19 weeks and 28 weeks, was on 10th centile at 19 weeks), head and abdomen normal (over 50th centile), all long bones less than 1st centile, most of them 8 weeks behind, he also had echogenic bowel. We were told he almost certainly had dwarfism or downs syndrome - he has neither. We got to 33+4 when I went in with high BP and reduced movements, he was in distress and I was borderline eclamptic so we had a C section half an hour after his failed ctg/non stress test. 3lbs 11oz and just under 15" long, legs were about the size of a 25 weeker, body and head of a 33 weeker - physically he looked like he had dwarfism for the first year of his life but he's 75th percentile for height now he's 4 and has had time to catch up! I had no signs of pre-e until I started having high BP at 32 weeks and was diagnosed with gestational hypertension, turned into severe pre-e less than a week later. Baby spent a month in nicu, his only lasting issues are a severe speech delay and disorder, but he's a happy healthy (and tall! Much taller than me and his dad at his age) preschooler now!

 

[pupscout]

@mark730 I found out at 19w that my daughter had severe IUGR and we also had oligohydramnios which complicated matters. Long story short, I ended up being admitted once I hit 21w and stayed at the hospital until I was 27w when my fluid suddenly was in the normal range overnight. She remained IUGR my entire pregnancy and decreased fetal movement and stillbirth were a big concern for my MFM. We went in for weekly scans to look at the cord flow and just baby in general, growth measurements biweekly. Once I hit 28w and was discharged we increased from once a week to twice a week. I had another hospital stay due to decreased movement. She was born via emergency c section at 36w and weighed exactly 2000g at birth. APGAR of 1 initially but ended up getting a 6 or 7 (I wasn’t there because I had to have general anesthesia so it’s hard for me to recall) and spent a little over a week in the NICU as a grower feeder. Now she’s almost 11mo. She’s been tiny and petite never exceeding 5th %tile since birth. But healthy and happy.

Biggest piece of advice is don’t second guess yourself if you think you have decreased movement. Go in and get checked. Trust your mom intuition. You know what feels normal and you will know if something is off.

 

[columba]

@mark730 I had severe IUGR that was diagnosed at my anatomy scan. For us we didn’t know anything about half of my husbands family so we opted for amnio and for us it was the best decision. Ours was normal and it was a relief. I had placental insufficiency and my biggest advice is to listen to your body and advocate for yourself. I delivered at 34+5. I had severe pre-e but it was masked because my BP was being controlled by meds throughout the pregnancy. My body started to rapidly decline and had I not advocated for myself both baby and I would likely have died. My baby was

 

[ldh]

@mark730 Admitted to the hospital at 28 weeks with high blood pressure, baby diagnosed with IUGR. Ultrasound found absent flow, and at 29+6 found reversed flow. C-section the next morning at 30 weeks, baby girl was 1 lb 11 oz. She’s been in nicu 24 days now and doing great.

 

[thelordzhope]

@mark730 Sharing my experience, my IUGR son was born May of 2021.

NIPT was normal at 11 weeks. At my anatomy scan of 20 weeks he was measuring behind. They repeated the scan at 24 weeks and he was still in the 3%. They referred me to the maternal fetal medicine specialist, where I was officially diagnosed with intra uterine growth restriction.

my MFM explained it as, Growth restriction can be genetic, gestational diabetes, certain viruses, or (often) placental issues. When it is the placenta, it may be okay initially and the only sign we see is small abdominal circumference with normal BPPs. But as pregnancy goes on, your placenta has to work harder (like pushing a cart up a hill), so a faulty placenta starts struggling more. That's when you see preeclampsia (which is also a placental issue) or cues in the BPP that indicate challenge, like elevated dopplers on umbilical cord flow (which means it's taking more effort for the cord to do it's job). They do the BPP because it tells us if the baby is struggling in other ways. If they don't see practice breathing or movement the way they want, that can be another cue that things are getting worse for baby. It's less like one definitive test to know when it's time to deliver, and more like a cluster of benchmarks they use to understand the baby's status.

For me it was indeed placental. I had weekly BPPs and suddenly (from one week to the next) I developed preeclampsia with severe features at 28 weeks (blood pressure 170/115 numbers), my son's dopplers were elevated. I was admitted, they gave me a bolus of magnesium and steroids for his lungs. He was estimated at 1 lb 13 oz. They were able to bring my pressure down and I remained inpatient for 2 weeks until I was maxed out on BP meds and my liver started to fail. They did another round of steroids and put me on mag for delivery. My son's cord flow never went past "some resistance" but he also put on very little weight. He was born via C-section at 30+4 and weighed 980 grams (2 lb 2 oz). So he only put on 5 oz in 2.5 weeks.

As soon as I delivered my pressure normalized. They kept me on meds for a few months and slowly weaned me off. My son was in the NICU for 8 weeks, the longest 8 weeks of my life. IUGR, especially early onset, can be scary. But I can say honestly that I am grateful for the exemplary care we received. While it was scary, having a competent medical team meant I felt as safe as possible about our outcome.

My son is now almost 3 years old. He is the light of our lives, he is healthy and active and bright and you would never guess (aside from his still somewhat tiny size!) how his life began. I'm sorry you're going through this. Some day it will be easier.

 

[matthew2414]

@mark730 We were diagnosed

 

[kitten3660]

@mark730 My story is very similar. Baby was measuring small (less than 10 percentile, sometimes less than 3) since my 20th week scan. But he kept growing in his own curve until 33.3 weeks when the placenta had absent diastolic flow and I was induced that week after steroid shots. He came out 3 lbs 8 oz. He had respiratory distress upfront, but came to room air in a few days. Most of his ICU stay is for feeding. He is doing well! I know it is very very anxious provoking, but listen to your body. If you feel something is off, make sure to get checked. Ask your ob if aspirin is worth it at this point. Good luck!

 

[onelove145]

@mark730 hey mamma! my baby was diagnosed iugr sometime around the 20 week anatomy scan. we had lots of ultrasounds following, and she was symmetrical. they couldn't find any reason as to why she was small (1st percentile), as everything—placenta, blood flow, cord, yada yada—looked perfectly fine. fast forward to 31 weeks and i had to have an immediate emergency c-section by a very quick progression of HELLP syndrome. later, my ob told me that this may have been what was causing the iugr, just marinating in the background but still not advanced enough to detect it.

not to scare you at all. extremely rare what happened to me, but all of that to say—go to the hospital the second you feel something may not be right. you never know mama.

i'll also note that ultrasounds aren't exact. right before my c-section, my ob told me to expect that baby girl would be small enough to fit in my palm. she came out 2lbs 14oz and 12 inches. everything will be alright for you. don't expect one, but prepare yourself mentally in the event of an early delivery. at the end of the day, your doctors will do all they can to keep baby in as long as possible.