IUGR Twins @20 weeks

Yesterday we had our 20 weeks scan. I am pregnant with mono/di twin boys.
I had a previous us which showed a 9 wk size difference at 15wks, so I was nervous to begin with. The scan took nearly 2 hours. Mid way through, the tech asked if I had had a 12 screening test. We had not (unsure dates, obs. on leave, then u/s booked out for 2 weeks meant I was 15 weeks before my first scan). At the end, she brought in another dr. They stared at the screen and whispered for quite a while. The dr then said she was going to go and speak to my obs. before my appt. We were starting to freak out. The tech then told us "we are having trouble locating a nasal bone on twin B and it is now measuring 2wks 4 days behind'.
We went down to the obstetrican. He explained because of the missing nasal bone and smaller size, it seemed highly likely that baby b had a chromosonal abnormality. He said that there was no sign of TTTS. He did not know the chance of baby a also having the same abnormality (most likely to be down syndrome). I said I had read about id twins were one has down syndrome and the other does not. He said it depends on at what stage the egg split. He rang a fetal specialist and booked me in to see him the next day. He spoke about having an amnio and what choices I would make if the result came back as positive for an abnormality. My husband and I had a horror 24hrs, talking through every possibility. The idea of a termination at such a late stage was so hard to even think about. My babies were kicking me the entire time.
We decided that if we were going to have 2 healthy babies (1 with down syndrome, 1 without) that would be hard, but OK. We would manage and feel blessed to have our 2 little boys. If the smaller baby was going to put his bigger brother in jeopardy, by either dying in utero or causing them both to be born very, very early then we would need to think about our options. We could not come to a definite conclusion if they both had Down Syndrome. I'm sorry if these views upset anyone, please believe we cried buckets of tears. We were just so desperate for at least one healthy baby. We were not just told we were having a baby with down syndrome, but that that baby was already 2 1/2 weeks behind his brother in size and would struggle to survive.
It was with a heavy heart we went to the fetal specialist today. Well, what a difference seeing a specialist makes! He is one of the top 3 guys in our state. He said the chance of 1 identical twin having a chromosonal abnormality whilst the other was obviously fine was incredibly small. He has seen one case of it occuring in his entire career, this year, and they were in the process of having the reports published in medical journals. He also said there was a small amount of evidence that TTTS could be in it's early stages. But he said the most likely scenario was that one had Foetal Growth Restriction, where the cord has implanted in a less than optimal place. He said he saw a woman with a condition similiar to mine, but her blood flow was worse than mine. They got her to 30 weeks and delivered two live babies. He is going to monitor us every week, which means a 4 hour round trip, but worth every minute. I am upset about the number of misleading things the first obs. told us, but he clearly did not know. (The reason for the 'missing nasal bone' was that it wasn't showing up on the u/s because the baby was still too small)
We are a long way from out of the woods. But we are in a better place than we were 24 hours ago, when we were being asked to decid the future of our babies. We know there is still the chance of losing them both, but we are thankful that the decision has been taken out of our hands. It is now fate, or God's Will, or whatever you choose to call it.
Sorry this is so long. My question is, does anyone else know of a smiliar situation with such a large size difference, or could anyone point me in the direction of some useful reading?

 

I don't have an answer to your question...but I am praying your strength through this difficult time... There's a reason why your OB sent you to one of the top men in your state...it's just good to know that they had the right mind to send you instead of trying to be "captain save all" (if that's a superhero)

 

I feel your pain. At my 19 week scan my baby a was measuring 2 weeks behind and the peri came in and told me about TTTS and I might need to terminate him for baby B to survive (they are also mono/di) It was very scary and we were checked once a week for fluid and every other week for a growth scan. I am now 29 weeks and baby A is still 2 weeks behind, but his fluid is good and the blood flow is good so we have been cleared for TTTS. They don't know why he's smaller, but he's consistently 2 weeks smaller so they are not as concerned. Best of luck to you!

 

I don't have any idea but I wanted to tell you that I'm praying for your family and two healthy boys. :hug:

 

Wow, I can't imagine the heart ache you're experiencing. I am so glad you saw a specialist - it makes all the difference in the world. We had our twins at a top Toronto hospital for that reason - we wanted access to the best if necessary. I just wanted to warn you that bed rest might be in your near future, at home or at the hospital. If it is recommended - do it! Follow all of the specialist's instructions. Best of luck to you. I have a feeling in my heart that everything is going to work out for you and this will just be a crazy story from your past one day.

 

Oh honey - what a really tough couple of days you've had. I don't know of any literature to read, but want to assure you that there are lots of twins born healthy where one is measuring behind the other. Some doctors tell you what week and day your babies are measuring (like one is 20 weeks 2 days and the other is 18 weeks 5 days) and some doctors tell you the percent size difference (25% size difference). Mine did size difference, and at one point Baby A was 31% smaller than Baby B, which is a really big difference. But she kept growing on her own curve and I delivered two healthy babies who are now completely normal, healthy 19 month old toddlers. You'd never know that one baby was born weighing only 3 lbs 11 oz.

I agree with the PP who advised you that you may be looking at bed rest. If the cord for one of your babies implanted on the edge of the placenta (which is what happened to my Baby A) or isn't in deep, the best way to keep that baby growing is to lie on your left side and rest. Talk to your specialist about when it might be advisable for you to cut back on work or other activities, when you might need to go on bed rest (if at all). And make sure you're eating TONS of protein. Drink two protein shakes a day in addition to what you normally eat.

You can do this, you really can. Hang in there. Feel free to PM me if you have questions or want to chat with someone who's been through the whole Growth Restriction thing.

Tricia

 

((kymbahlee))

We are in the same place as you!!! There is hope!

My mono/di girls are now 25 weeks and doing fairly well. One of them was officially diagnosed with selective IUGR (sIUGR) at 18 weeks. Size discrepancy and nuchal abnormalities showed up as early as my 12 week ultrasound. My baby B is currently measuring approximately 3 to 3.5 weeks behind and is well below the 10th percentile for growth. She is 45% smaller than her sister. Baby A is normal for growth and fluid.

Before we hit 24 weeks, we were faced with the decision of whether to terminate one, both, or just proceed with expectant management with the understanding that the little one could go into distress at any time, endangering her sister with possible brain damage or extremely premature birth. This was the hardest decision I have ever had to make, and I spent countless hours crying, thinking about how life is not fair to make me have to make a choice that benefits one of my children over the other.

We went to a number of specialists, three hospitals, and had so many ultrasounds that I have lost count. We had consultations from several doctors who are specialists in TTTS and sIUGR. In the end, because their dopplers (umbilical cord blood flow) were strong, we decided to stay the course and we will try to make it to 32 weeks if not longer. We are just taking it week by week.

As to what I personally can do for my situation, all of my docs told me "not much". I do not have a cervical problem so bedrest will probably not help. All they said was to eat a lot to fatten those babies up, in case I have to deliver early. My docs have me on weekly doppler checks and bi-weekly growth scans. If my little one develops absent end diastolic flow, they will increase the test frequency and I may be admitted to the hospital for monitoring.

The main things that your doctors and sonographers should be looking for are:
-fluid volume (does B have too little fluid(oligohydramnios)? Does A have too much (polyhydramnios)?),
-bladders (do both babies have active bladders?),
-dopplers (how is the umbilical artery flow in baby B? Baby A? Is there absent or reverse end diastolic flow?),
-size discrepancy,
-hearts (do either baby A or B have any hardening or are they showing signs of cardiac stress?)

You are your babies' strongest advocate. Read up on sIUGR and TTTS, talk to several perinatologists, and be an "informed consumer".

Feel free to PM me if you have any questions - my husband and I have done a lot of research!!!

Also I am sure Danielle (TwinsInFL) will pipe in as soon as she has some time away from her beautiful new baby girls who also struggled with IUGR and were delivered last week...

 

Thank God for specialists! Lots of :hug: and prayers your way.

 

Thank you for all your words of encouragement, thoughts and prayers. It means so much that strangers on the other side of the world take the time to write words of encouragement. I am feeling a little better, it was therapeutic just writing down my story.
Waterguzzler, I am thinking of you and your babies too in this hard time.
Tarin, fantastic news for your little ones. Every week must feel like a blessing. I hope my gap stabilises, too, and does not keep widening.
idril it is great to read positive stories with a happy ending. Thank you! Thankfully I finished work last week so I plan to put myself on 'couch rest' for while.
hrm17 our stories seem very similiar. I am so pleased for you that everything is going well with both your babies will on board! Lets hope we both get to at least 32 weeks! I am very interested to follow your progress so please post regular updates!

Some things I have been wondering:
If my babies deliver at 30 weeks, with the smaller baby measuring 26 weeks, are smaller babies organs developed to 26 or 30 weeks?
What long term mental and physical implications does iugr have apart from the risk associated with being born premature?
Is my babys brain getting enough blood flow?

These are some of the things I will be asking on Monday at my next appt but if anyone has any thoughts before then I would love to hear them!

 

Kym, I just delivered two healthy mono/di girls last week after an 11 week battle with IUGR. Our baby A had poor cord blood flow and was delivered at 2lb 4oz, which was 2 lb less than her sister at 33w6d. Both girls are doing incredibly well now. They are in the NICU still, but only to feed and grow. Baby A needs to grow bigger and baby B needs to bottle feed consistently. If you go back and look at my posts, you can see our entire story. Feel free to PM me if you have any specific questions, but please know that you can get through this with healthy, happy babies.

Tarin - I'm a bit concerned that your doctor would even illude to termination of one of your mono/di twins. Terminating one will compromise the life of the other if they are mono/di. If he/she was serious, you might want to look for a new doctor. I say this only out of concern and care for you and your little ones. The whole reason I was on hospital bed rest for 7 weeks was to watch twin a because if something happened to her, we had to get twin b out immediately.

 

QUOTE(kymbahlee @ Dec 26 2008, 12:16 AM) [snapback]1122226[/snapback]
Some things I have been wondering:
If my babies deliver at 30 weeks, with the smaller baby measuring 26 weeks, are smaller babies organs developed to 26 or 30 weeks?
What long term mental and physical implications does iugr have apart from the risk associated with being born premature?
Is my babys brain getting enough blood flow?

These are some of the things I will be asking on Monday at my next appt but if anyone has any thoughts before then I would love to hear them!

My little girl actually did much better than her sister at birth. She was intubated immediately as a precautionary step. Her tube was removed after a few hours and she has required no respiratory help since then. All of her organs are developed and perform up to snuff. One thing they watch closely in poor blood flow IUGR babies is their intestines. When there is limited blood flow, the body prioritizes the organs beginning with the heart, brain, lungs and ending with the digestive system. They will watch your little baby closely to make sure that feeding is being tolerated as it should be.

The best person to ask these questions will be your pediatritian. Have you had a prenatal visit? Your OB has limited knowledge of babies once they are out of the womb.

 

QUOTE(TwinsInFL @ Dec 26 2008, 02:02 AM) [snapback]1122241[/snapback]
Tarin - I'm a bit concerned that your doctor would even illude to termination of one of your mono/di twins. Terminating one will compromise the life of the other if they are mono/di. If he/she was serious, you might want to look for a new doctor. I say this only out of concern and care for you and your little ones. The whole reason I was on hospital bed rest for 7 weeks was to watch twin a because if something happened to her, we had to get twin b out immediately.



In the beginning she was just giving me the worst case scenario. She hasn't mentioned it since.

 

You all are in my prayers, hang in there. When my aunt thought her unborn baby was going to have down syndrome she was able to through her pediatrician meet with some parents of other children with the disease and it really helped her feel a little more confortable about the future, perhaps this is something that you and your hubby could do.

 

QUOTE(kymbahlee @ Dec 26 2008, 01:16 AM) [snapback]1122226[/snapback]
Some things I have been wondering:
If my babies deliver at 30 weeks, with the smaller baby measuring 26 weeks, are smaller babies organs developed to 26 or 30 weeks?
What long term mental and physical implications does iugr have apart from the risk associated with being born premature?
Is my babys brain getting enough blood flow?

These are some of the things I will be asking on Monday at my next appt but if anyone has any thoughts before then I would love to hear them!


Kymbahlee, to answer your questions:
-Yes, your smaller baby's organs will be developed appropriate for his actual age. He will just be smaller.
-Assuming the docs catch any cord flow problems and deliver at the right time, there should be little or no neurological problems. As my peri put it, "her IQ may be 5 points lower but otherwise no difference". 5 points is nothing! Physically your smaller child may always be a bit smaller, but in my opinion that's not a big deal.
- Brain blood flow: when you go for monitoring, have the sonographer or perinatologist check the Middle Cerebral Artery at the ultrasound. Growing fetuses are amazing: their bodies will make sure all the blood flow that is needed for the brain and heart is getting where it needs to go. This might be at the expense of the kidneys and intestines, as Danielle mentioned, but it just requires monitoring.

Danielle & Tarin, my doc also mentioned termination of one baby around 18 weeks. That was when we switched docs and started talking to a bunch of specialists in two different states!! What I heard from the specialists is that it is really a last resort. They CAN terminate one via laser ablation or cord ligation, with relatively good success (85% of surgeries have no complications to the surviving twin), but it should only be done if the smaller twin goes into distress VERY early and the other twin is not yet viable (ie. before 23-24 weeks). The thinking is that it would be better to have one surviving baby rather than none. Luckily, my girls have made it past that point and are going strong.

 

Thanks for the answers hrm17. They are exactly what I was hoping to hear!
It is the most horrible thing to be asked if you would terminate one of the twins. I am so glad all hrm17, Tarin and I are going to be able to proceed giving 2 babies a chance. At our 20 wk ultrasound the doppler flow was good to the little one so I am really hopeful to get past the next month. Are either of you on bedrest?
TwinsinFl I have been following your story but only for the last 4 weeks. I am so glad your little ones are doing well. You said you battled iugr for 11wks, so was it only picked up at around 22wks? Do you remember what kind of size difference you had then?

 

QUOTE(kymbahlee @ Dec 26 2008, 04:15 PM) [snapback]1122591[/snapback]
Thanks for the answers hrm17. They are exactly what I was hoping to hear!
It is the most horrible thing to be asked if you would terminate one of the twins. I am so glad all hrm17, Tarin and I are going to be able to proceed giving 2 babies a chance. At our 20 wk ultrasound the doppler flow was good to the little one so I am really hopeful to get past the next month. Are either of you on bedrest?
TwinsinFl I have been following your story but only for the last 4 weeks. I am so glad your little ones are doing well. You said you battled iugr for 11wks, so was it only picked up at around 22wks? Do you remember what kind of size difference you had then?



I've been on bed rest since 26 weeks. The doppler flow to both babies for us is good and the fluid is as well. Hopefully as you go everything continues to be ok!

 

QUOTE(kymbahlee @ Dec 26 2008, 04:15 PM) [snapback]1122591[/snapback]
Thanks for the answers hrm17. They are exactly what I was hoping to hear!
It is the most horrible thing to be asked if you would terminate one of the twins. I am so glad all hrm17, Tarin and I are going to be able to proceed giving 2 babies a chance. At our 20 wk ultrasound the doppler flow was good to the little one so I am really hopeful to get past the next month. Are either of you on bedrest?


My docs are not big believers in bedrest unless there is a problem with the cervix or if I start having contractions. I was told to "take it easy", meaning no aerobic workouts or anything, but I am still working full time 40-45 hours a week with a 45 minute commute on the subway. I do have a desk job though, so I spend most of my day sitting at a computer with my feet up, eating a ton of food! I am not even hungry; I just force myself to shovel it in.

If cord blood flow were to become absent or reverse, that might be a different story in terms of bedrest, but so far it has not happened.

 

I know how hard this can be, but try to stay calm and get lots of rest for the good of your babies. Also, if you haven't modified your diet already, increase your protein to at least 100g per day.

I had an IUGR baby diagnosed at 20 weeks. She was 3 weeks behind. I ended up on modified bedrest, then full bedrest, then I was put in the hospital at 27 weeks so they could continuously monitor and u/s her every few days. I got steroid shots, but I ended up making it to 34 weeks! DD started having reverse cord flow, so we did a c-section. She was bor half the size of her brother, 2 lb 10oz compared to 5 lb 8 oz. She had to spend a month in the NICU, because she had to weigh 4lb to be released, but her lungs were actually better than her brother's (no oxygen needed).

Now, they are almost 8 months old and doing well!

 

QUOTE(kymbahlee @ Dec 26 2008, 03:15 PM) [snapback]1122591[/snapback]
TwinsinFl I have been following your story but only for the last 4 weeks. I am so glad your little ones are doing well. You said you battled iugr for 11wks, so was it only picked up at around 22wks? Do you remember what kind of size difference you had then?

I was on hospital bed rest for 7 weeks before they were born. The size difference was detected at our appt 4 weeks prior to me being admitted, but they let me go home from that appt and said we would wait and watch. That's why I say 11 weeks even though I was only in the hospital for 7 of it. I wasn't to the point of viability at the earlier appt, so they did not act as aggressively at that time. At 22ish weeks, they were 24% different. Then, at 26w5d, they were 45% different. Little sister continued to measure 4 weeks behind as far as size goes. Functionally, she's right in line with her bigger (younger, haha) sister.

As for the bed rest, I know different doctors feel very differently about it, but my docs (and I) believe whole-heartedly that it is the only thing that saved my little girls' lives. I had absolutely no signs of PTL even up through the day I delivered. My blood pressure was manageable and my cervix stayed long and in tact. I was basically on a "hotel" stay at the hospital with extremely frequent monitoring of the girls. As I see it, the bed rest may be contreversial, but it certainly did not hurt. Every time I would ask the doctors "what else can I do to help my girls?" they told me that the bed rest was the best thing possible. Needless to say, I'm a huge proponent and if it's something you can swing financially, it can't hurt.

Best of luck to you and your little ones. I know it's rough. I was getting 3 u/s every week and got to the point where I could read their dopplers myself. It's a scary thing, but our medical world is so advanced, it's amazing. Feel free to contact me with any questions or concerns as you get more into the IUGR journey. I know it's hard to believe now, but the weeks will fly by and you'll be holding your little darlings before you know it. :good:

 

Thanks for all the replies. Fletchie that is great that you made it to 34 weeks. Positive stories are really helping!
It is interesting to read different drs opinions on bedrest. We are 2 hours from the hospital and I have a 20 month old and a 3 1/2 yr old so we need to start planning ahead.
I live on a sheep farm in Australia so protein is not a problem. I think we Aussies tend to eat 100g just for breakfast! Jokes aside I am paying more attention to my diet and have bought some protein drink powder.