SIUGR baby

E

eb3

New member
TW: possible death

Just left my 18 week appointment. Baby A is beautiful and in the 26th percentile. Baby B is tiny and less than 1%. Other than the size the both look great.

Our MFM doctor has referred us to a nearby hospital to discuss possible RFA…letting Baby B go for the sake of A. If we try to continue on and Baby B dies on his own, Baby A can suffer from a stroke.

I am shattered. I can feel little B moving around and now I have to let him die? This is the most horrifying thing that had ever happened to me. My husband is distraught. We don’t know what to do.

UPDATE: In case an future parents out there need this information like I did I am sharing it here. 18+4 with modi twins.

I had an appointment yesterday at Children’s Hospital Colorado to see a fancy doctor after a referral from my MFM. First we did an electrocardiogram of each babies heart. Everything was great there. Then a really in depth ultrasound. I haven’t done my anatomy scan yet but I assume it was a similar ultrasound. They measured all his bones and looks at his facial features, brain, everything. My Baby A is huge but Baby B is
 
@eb3 At anatomy scan at 20 weeks, Baby A was double the size of Baby B. They were di/di twins but identical (we found out via amnio, which they referred us to in order to rule out genetic issue/infection). Amnio came back completely clear and they discovered the discordance was due to B’s cord inserting at the very edge of the placenta which limited her growth. They told us baby B likely wouldn’t make it and to be ready for her to pass. Made it all the way to 35+2, and then wife got a c-section due to pre-eclampsia (if it weren’t for that we probably could have gone to 37). Both were born healthy overall, although baby B was
 
@eb3 Don’t lose hope for your small baby…mine has been less than 1% since about 18 weeks as well and I’m 32 weeks now, expecting a c section in the next couple of weeks! We expect a NICU stay but the doctors are very hopeful. Ask the doctors what stage SIUGR you are because that does make a difference in decision making. Message me if you need to talk!
 
@eb3 Mo/di. We also had a TAPS diagnosis that resolved at about 22 weeks. But the doctors were not hopeful for us at first and also offered fetal reduction, but we decided to wait it out
 
@treacle99 They didn’t give me a specific stage. My notes say “S/D Ratio: On occasion the end of diastole, there is a “gap” in diastolic flow.”

Then later on “Twin B seen with rare AEDF at the end of diastole, no REDF seen. No TTTS, no TAPS”
 
@eb3 REDF stands for the reverse end-diastolic flow mine developed so it’s a good sign I think that they aren’t seeing there in yours! Are you close to a good hospital? We were referred to Hopkins in Baltimore and they monitored super closely until we got to stage 3 and they delivered 12 hours later
 
@eb3 My SIUGR twin is now almost 9 years old and healthy! ❤️

I had my twins in 2014 and was able to hold onto them until 38 weeks when my MFM required an emergency C-section due to reverse cord flow.

Starting at 20 weeks when they caught the IUGR we had 1X weekly ultrasounds and 1X weekly NST, plus a weekly MFM visit. By 34 weeks I was getting an NST or ultrasound every other day and cord doppler done 2X a week. It was obviously a ton of appointments but my little girl was fine!

She was 3lb 15oz and on her first birthday only 10lbs. Now at 8.5 years old she’s “caught up” and 40% for weight and 70% for height. She’s significantly smaller than her twin brother who is over 100% for both height/weight and has vision problems and some learning difficulties (disgraphia) but she was a fighter.

Speak with an MFM. Ask for as much monitoring as possible.
 
@eb3 I had this, but also some degree of TTTS, similar to others here I had multiple appointments each week of pregnancy including ultrasounds and NSTs. At about the same stage I was told Baby B was doing very badly and some surgical intervention might be needed, so I traveled quite a ways to this clinic:
https://losangelesfetalsurgery.org/
They are different in that they will not just terminate the struggling twin, but they go through a more complicated process to separate any connecting vessels between the twins, so that if one doesn't make it, the other has a much better chance of still surviving. Let me know if I've explained it badly, and I can try again.
Many places will not give you this option because it is much more difficult, but maybe you can ask about it and look into it yourself. My MFM doctor was amazing and she said there were only about three clinics that she would really trust with my case, the LA one I went to, one in Denver, and one in Philadelphia, I'm sorry I don't know the names of those clinics.
My little SIUGR baby ultimately hung on enough that they evaluated me and decided to hold off on any surgery. Which was fine, the trip was not in vain, I learned so much there -most importantly that in spite of how bad it looked, the chances of a good outcome were in my favor. My MFM continued to monitor me in my home town, and we made it to 34 weeks, there was about a month in the NICU, but they are healthy and happy 2-year-olds today.
 
@eb3 I'm so sorry. Twin pregnancy is so hard because you constantly have to make decisions knowing it may have a negative impact on one twin to try to benefit the other one or both.

I will say that I consulted with two MFMs while I was pregnant. One basically thought I was a ticking time bomb for early delivery and potential fetal loss due to IUGR, and the other thought everything was fine and that my babies were just small. The second MFM turned out to be correct. But we didn't have cord flow issues, they were just consistently under 1st and 5th percentile from 23 weeks on.

I don't want to give you false hope or influence your decision when I don't know all the facts, but you may have better peace about your decision if you have another professional opinion.
 
@giovonni32
Twin pregnancy is so hard because you constantly have to make decisions knowing it may have a negative impact on one twin to try to benefit the other one or both.
Click to expand...

Damn, this hit me hard. Spot on, and it doesn’t end when they’re out, there’s just more you can do.
 
@eb3 I’m so sorry that you’re going through this, I know it’s extremely scary, stressful and hard to stay positive. We had a SIUGR diagnosis at around 18 weeks. Mo/Di twins with Baby B measuring much smaller in the 3rd percentile with absent end diastolic flow. We were given the same 50/50 chance of survival for Baby B and were told we may need to consider a reduction. It was devastating.

We were also told there was nothing we could do to help which sucks because being able to do anything is better than doing nothing except worrying. I too did some aggressive googling and read about increasing protein intake and I immediately began drinking Ensure three times a day.

We also had to go for weekly ultrasounds. Fortunately our Baby B kept growing albeit very slowly and our absent end never reversed flow. I ended up living in the hospital starting at 30 weeks because Baby A’s sack ruptured. They were born via emergency c-section at 33 weeks because Baby B’s heart rate had started to decel. They were both born healthy just very small. baby B was 3.2 pounds and he’s now a very healthy 8 year old who is still below 5% on the growth chart. Tiny but super strong and crazy smart.

I can’t say whether or not the protein actually helped but it made me feel better being able to do something and that helped keep my stress level down.

I know this is a tough diagnosis but there are happy endings even in what seems like the most dire circumstances. I like to share my story whenever I see these posts because there was so little information when I was going through it, so I hope this helps! I will keep you in my thoughts.
 
@eb3 The thing about this is there is no right answer. Its a shit situation.

Our twins were MO/DI and baby B tracked under 5% for the whole pregnancy. Baby B also had REDF throughout most of the pregnancy. They were born early but are fine now, which I imagine will be the case for most people who reply here. It could go the same way for you or it could not. Speak to your medical team, they will know you and your situation better than reddit. Write your questions down and take them with you, it's easy to forget when you are there.

You will figure out whatever is right for you.

Good luck
 
@eb3 This sounds awful and I really really feel your pain. I know it's hárd now but don't lose hope. I'm currently holding my little baby B, my little IUGR in my arms after a feed!
My twins been home from the NICU for a couple weeks now. Was in the doc for something unrelated and I'd mentioned I felt less foetal movement so they scanned me and found out baby b was less than 1% percentile. She had completely dropped of the charts in the previous weeks. Doc said it was the most severe and sudden drop like that he'd ever seen and that we would likely lose baby B. I was admitted to hospital straight away and had daily monitoring and scans every Tuesday sbf Thursday. There was absent end chord flow to baby B. She hung in there to 29+4 when the scan revealed reverse flow and they were born by c section then. Twin A was 3lbs and twin B was 1lb 6oz. Twin A was in the NICU for 7 weeks and twin B for 9 weeks. It was a long road but now they're home and they are perfect. My father said something to me when i got the diagnosis and I had lost all hope of twin B surviving. He said "where there is life there is hope" and I hung onto that so tightly! It got me through those hard days in the hospital and I'm offering it to you, maybe it will give you some hope too ❤️

Edit: spelling
 
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