My high risk OB never told me about TTTS.

[*Sheryl*]

I just wanted to tell you all, especially those who are expecting, my story.
I found out I was having twins at 12 weeks. I had my first US to make sure everything was ok (my first pregnancy). There were two babies and there was a membrane visible at that time. The Dr doing the US, who I only saw once, didn't tell me whether there was one placenta or one chorion. I was too excited and knew nothing about twin pregnancy at the time, so I didn't even think to ask.
I got a high risk OB around 14 weeks and continued to see him until I delivered. We did regular ultrasounds and I asked every question possible so that I could educate myself on twin pregnancy. I read a lot as well. My OB and the ultrasound techs were always very vague with me and never answerred my questions clearly. I wondered if they were identical, if there was one placenta or two, ect. I had a hunch they were identical.
The OB and techs always looked a little concerned during US about the wieght difference of the babies. I thought that this meant they must be fraternal twins with different weights.
Around 32 weeks the OB told me he was very concerned about twin B (the smaller twin) because he was so much smaller and his fluid was lower. He told me that I should lay on my left side, eat lots of protein and stay off my feet. I gained a whopping 80 pounds and most of it was in the first and second trimester. I began to swell very bad. I was diagnosed with Pre-clampsia and was induced at 37 weeks (though I was 3 cm dialated already and I din't know it.)
I didn't know whether my twin boys were MZ or DZ twins until they were delivered. At delivery my OB said they were MZ, shared one chorion, one placenta and had two amnions. It was hard to tell they were identical at the time because Aden wieghed 6lb 10oz - 19 inches long and Caleb was 5lb 6oz 17 1/4 inches long. I could see in their faces that they were identical even though they were different sizes. They arel healthy boys and are now almost 13 months. They are more or less the same size now, but there have been physical developement issues. Caleb (the smaller twin at birth) is about 2-3 months behind Aden in everything physical. His muscles seem weaker and his balance is not as developed as Aden's. I don't worry about this anymore though. Caleb will be walking by 14-15 months I'm sure. He crawls like a pro and stands up a lot. I have read that TTTS can cause differences in physical development during infancy, that is why I mention it.
Since the birth of my sons I have done much reading on TTTS and I am shocked that my OB never told me anything about it. Because in fact my boys did have a mild case that was luckily not life threatening. I think he didn't tell me so that I wouldn't worry. I don't appreciate that he kept me in the dark about something so serious.
I hope that anyone who's babies have this condition...are given the information they deserve and that all is well. Take care of yourselves and eat well. Best wishes.

[Monica]

How scary!

Thank goodness you had a happy ending. Sadly enough, so many doctors underestimate TTTS, and that can lead to tragedy.

Your sons are just adorable!

[*Sheryl*]

Thanks Monica. Yes we were lucky. I feel for those who have severe cases.

[busymomof3]

Your boys are beautiful. We too were not told about it but it was on bedrest and read anything and everything I could about twins. I had read about TTTS and asked my doctors about it. I went to excellent doctors. One of my peri's is one of the top ten in NJ. Still they said they did not have TTTS. At the very last appointment they seemed concerned about the difference in the weight but said that weight is only a small component of TTTS.
My son Johnny the donor twin, is also a little bit behind Nicholas developmnentally. I would say about a week or so behind. As they get older a week or a few months will not matter or show as much as it does now.
Thanks for sharing your story.

[dixiegirl]

Thanks for sharing your story. Too often this kind of thing happens or a woman isn't even lucky enough to see a peri at all and her OB isn't knowledgeable about TTTS. Hopefully, someone will read your story and demand straightforward answers.

Did your peri do U/S every week? I'm curious, because I think one of the biggest problems is that u/s is not done enough on women pregnant with identicals. TTTS Foundation recommends that every woman pregnant with identical twins have a u/s every week starting at week 16...because it can develop at any time and can worsen within minutes to hours. They are trying to get AMA to make this a standard of care, but I believe they have not yet succeeded in convincing them (and the insurance companies, I'm sure). Lucky for me I only had to pay $25 per u/s...I had them weekly from week 18 until bedrest at 28 weeks, then every day in hospital until I delivered at week 32.

I find both babies are pretty much even developmentally (they are 14 months old now)...one may do something a week or so before the other, but mostly they are developing at about the same rate. The smaller baby remains smaller, by 2 1/2 pounds...although they eat the same amount of food.

Thanks again for sharing your story.

[*Sheryl*]

Thanks. I wanted to post my story to give the expecting ladies a heads up about their Doctors. I just expected intelligent answers from the US techs and my OB and I never got them.

[elle630]

My son Johnny the donor twin, is also a little bit behind Nicholas developmnentally. I would say about a week or so behind. As they get older a week or a few months will not matter or show as much as it does now.
Thanks for sharing your story.

I am SO glad to see this comment from you and the other mum! My girls also suffered a touch of TTTTS, luckily I was sectioned at 33 wks and 5 days, before it got too bad (I was 5 cm dialated and progressing)
My smaller twin, Helena is about a week behind Olivia in everything. Olivia was teething about a week before Helena, Olivia was crying for me and became very attached to me about two weeks ago. She is now over this and now Helena is doing it.

Were your boys also different in size? My smaller girl looks like her twin, only a mini me version. Her head is a tad smaller (not to mention the fact that she is less, umm. voluptous than Olivia! hehehe, less chins etc.) and I wonder if she'll catch up.
One pediatrician said that some TTTTS babies are like the runt of a litter, they always stay smaller. I was shocked and bothered by her wording! My new ped, same office but so lovely!, said she thinks Helena will catch up as their TTTTS was caught early on, though it may take a while.

Thanks for sharing your story! And for any answers you may have for me,
Much Love and Merry Christmas! elle (PS- I hope I didn't offend anyone with the Merry Christmas! I saw that her boys were wearing Santa hats and thought them adorable!!)

[elle630]

Thanks. I wanted to post my story to give the expecting ladies a heads up about their Doctors. I just expected intelligent answers from the US techs and my OB and I never got them.

Thank you so much for sharing! I posted a reply to another mum about my girls. Your boys are BEAUTIFUL! And it looks like who ever WAS the smaller twin has caught up as I can't tell who it must have been! Yay!

How long did it take for him to catch up? Did people point out their differences? People do that to me all of the time! Call one baby FAT! I drives me bananas because she's NOT fat at all- just that seeing her by her smaller twin makes her seem so large but my singleton was WAAAAY bigger than both of them!

Much love and happy holidays, elle

[elle630]

Did your peri do U/S every week? I'm curious, because I think one of the biggest problems is that u/s is not done enough on women pregnant with identicals. TTTS Foundation recommends that every woman pregnant with identical twins have a u/s every week starting at week 16...because it can develop at any time and can worsen within minutes to hours. They are trying to get AMA to make this a standard of care, but I believe they have not yet succeeded in convincing them (and the insurance companies, I'm sure).

I find both babies are pretty much even developmentally (they are 14 months old now)...one may do something a week or so before the other, but mostly they are developing at about the same rate. The smaller baby remains smaller, by 2 1/2 pounds...although they eat the same amount of food.

Thanks again for sharing your story.


I had ultra sounds bi-weekly. At ppone point an assistant to my peri said I should come back in a month and I had a fit! So they continued on my regular schedule. I didn't feel that the u/s tech should make this call and my peri was called out on an emergency delivery.


So your twins are still different weights? Do people point that out? Some people, point out that Olivia is a fat baby, and that can't be identical if one baby is bigger! Ugh. I almost cringe when people ask me if they are identical because then they ask me why one is' fatter' as most put it.

[busymomof3]

Elle~ I'm glad your girls are doing good. They are gorgeous. Yes Johnny was 4-9 at birth and Nicholas was 5-2. Nicholas is still the bigger of the two and he seems to be developing just a smidge quicker than JohnJOhn. Nicholas will do something and then a week later JohnJOhn so they are just about even. We also have the smaller head issue. I think when they get bigger it will be less obvious. My JohnJohn also has a hemangioma on his forehead (which you can't see in the picture), so our guys are easier to tell apart.

I can't believe a doctor called him the runt of the litter how rude....

Did your donor need a blood transfusion? Just curious.

Sorry that you had to go through this as well but I'm glad you have posted here. MErry Christmas to you to. I hope to hear from you soon.

[elle630]

Did your donor need a blood transfusion? Just curious.

Sorry that you had to go through this as well but I'm glad you have posted here. MErry Christmas to you to. I hope to hear from you soon.

No Flower she didn't get a blood transfusion- she is VERY anemic though- and her ped is following her with blood/iron level checks at each appointment0 says she thinks it was because she had less blood, less iron, etcc. Olivia is doing well on that front.
So I give Helena that baby Polyvisol vitamin. Hopefully she will be better soon.

Is the hemangioma(sorry if this is misspelled! just going by memory) just a red birth mark? My girls have those (the red birth marks that is- not sure if it's the same thing but I recall one ped calling it something similar if not that)

I always wondered how ID twins could have different birth marks. Mine do- with those little red marks. Olivias have faded considerably, Helena's are more red.

Look forward to talking to you!
(how fantastic that your boys are sitting up! must get a TAD easier for a little while- before they crawl right? I hope so! Please don't burst my bubble! hehehe) Love, elle

[busymomof3]

Elle- It was nice when they were just sitting but now they are crawling and standing and cruising the furniture. AlthoughI feel like a bad mom admitting this Nicholas has already got his first set of stitches. He was trying to stand on cut his lip on the leg of my desk.
From what the doctor's have told me about his hemaganioma and other differences is that basically their DNA is the same but that is it. Different environmental factors are responsible for things like birthmarks, and the fact that they have different finger prints. I was surprised as well. Here is a picture my little guys without a hat on. You can see Johnny's h.
By the way~ this is them standing a month ago at 7 1/2 months.

<img src="http://img32.exs.cx/img32/7584/johnnyhforboard8ze.jpg" width="512" height="384" alt="Image Hosted by ImageShack.us" />

[*Sheryl*]

Hello Elle,
I'm sorry I must have missed the new posts. Yes from the picture it is hard to tell that Caleb was so much smaller. It wasn't until 9-10 months that the weight difference was resolved. Caleb is still one inch shorter. When they are standing side by side it is noticable.
I actually had someone ask me if they were identical once and I said yes one is just a little bigger. They replied with "Oh they aren't identical then, if they are different sizes." :(
It sounds like your girls are developing great. Weeks behind each other is nothing at all. Caleb is still not walking at 14 months. Just as a comparison Aden took his first steps at 101/2 months and was walking at 11 months. So there is a 3 month difference there. Aden was crawling at 61/2 months and Caleb didn't have the strength or balance unitl just about 9 months. I really should have taken Caleb to physical therapy because he's not making a lot of progress towards walking. Hopefully, soon....
I'm glad your daughters case was not severe and they are BEAUTIFUL Elle...even if one of them is mini! That will change soon enough.

[*Sheryl*]

By the way...HAPPY HOLIDAYS EVERYONE!! :D

[elle630]

Elle- It was nice when they were just sitting but now they are crawling and standing and cruising the furniture. AlthoughI feel like a bad mom admitting this Nicholas has already got his first set of stitches. He was trying to stand on cut his lip on the leg of my desk.
From what the doctor's have told me about his hemaganioma and other differences is that basically their DNA is the same but that is it. Different environmental factors are responsible for things like birthmarks, and the fact that they have different finger prints. I was surprised as well. Here is a picture my little guys without a hat on. You can see Johnny's h.
By the way~ this is them standing a month ago at 7 1/2 months.

<img src="http://img32.exs.cx/img32/7584/johnnyhforboard8ze.jpg" width="512" height="384" alt="Image Hosted by ImageShack.us" />


They are ADORABLE!! And bald like mine! hehehe
STANDING at 7 1/2 months! Yikes! Stories like that scare me!!
Okay- so the hemangioma is like a little blood blister is that it? Helena has red marks- I wonder what hers are called....I will have to ask the ped- they are due for their 6 month vax (actually should have had them last week! Bad mummy!

How did the stitches go? I would have been heart broken! Kids are always getting bumps, and bruises- and all bloodied up! My girls, still not mobile have yet to get truly hurt- soon enough!

Do people tell you they aren't identical because of the hemangioma? People tell me that because of the red marks on Helena's eye! Olivia had them too but hers have faded already while Lena's are taking a bit longer.

People LOVE to be able to tell them apart- they'll say,' Oh I KNOW which is which!'
I feel like saying- Umm, would you like a cookie?
hehehe
Thanks for sharing their piccy! I changed my sig so you could see a new picture of mine- taken this Saturday before their baptism- and now it's changed all of my signatures! hehehe
I look forward to talking to you!
Love, and snuggles to all of you, elle

[elle630]

Hello Elle,
I'm sorry I must have missed the new posts. Yes from the picture it is hard to tell that Caleb was so much smaller. It wasn't until 9-10 months that the weight difference was resolved. Caleb is still one inch shorter. When they are standing side by side it is noticable.
Hopefully, soon....
I'm glad your daughters case was not severe and they are BEAUTIFUL Elle...even if one of them is mini! That will change soon enough.
Thank you flower
This is a picture from this passed Saturday, Olivia, on your left is the volouptous one...
Helena is the mini Livi :)
I am happy to see that they do eventually catch up! The hospital they were born at offered me a developmental program- in which, free of charge, they follow the babies' development to ensure they are doing things in a timely manner.

People are crazy! Saying they aren't identical because there is a size difference! My FIL's wife is a twin- fraternal and she's always trying hard to point out my girls' differences. Of course she and her twin haven't spoken in years and I can see why! hehehehe

on another note- our very close friends have an uncle that is an identical twin. He was looking at my girls and mentioning how identical they were- I gave my regular spiel about their size difference, (I always feel apologetic when people ask me if they are identical! Like I have to explain why one is bigger than the other!) and he said,' I am an identical twin and my twin is MUCH heavier than me- yet on the phone I can still fool his wife of 35 years!' Weight is something that is controllable. If one eats more than the other than that one will be heavier- of course one of mine was more nourished at birth so she is a bit bigger but in general that's how things go!

I hope to see you around here! I have met some very nice mums and then lost them forever on this forum! hehehe
Love, elle

[elle630]

I just wanted to tell you all, especially those who are expecting, my story.
I found out I was having twins at 12 weeks. I had my first US to make sure everything was ok (my first pregnancy). There were two babies and there was a membrane visible at that time. The Dr doing the US, who I only saw once, didn't tell me whether there was one placenta or one chorion. I was too excited and knew nothing about twin pregnancy at the time, so I didn't even think to ask.
I got a high risk OB around 14 weeks and continued to see him until I delivered. We did regular ultrasounds and I asked every question possible so that I could educate myself on twin pregnancy. I read a lot as well. My OB and the ultrasound techs were always very vague with me and never answerred my questions clearly. I wondered if they were identical, if there was one placenta or two, ect. I had a hunch they were identical.
The OB and techs always looked a little concerned during US about the wieght difference of the babies. I thought that this meant they must be fraternal twins with different weights.
Around 32 weeks the OB told me he was very concerned about twin B (the smaller twin) because he was so much smaller and his fluid was lower. He told me that I should lay on my left side, eat lots of protein and stay off my feet. I gained a whopping 80 pounds and most of it was in the first and second trimester. I began to swell very bad. I was diagnosed with Pre-clampsia and was induced at 37 weeks (though I was 3 cm dialated already and I din't know it.)
I didn't know whether my twin boys were MZ or DZ twins until they were delivered. At delivery my OB said they were MZ, shared one chorion, one placenta and had two amnions. It was hard to tell they were identical at the time because Aden wieghed 6lb 10oz - 19 inches long and Caleb was 5lb 6oz 17 1/4 inches long. I could see in their faces that they were identical even though they were different sizes. They arel healthy boys and are now almost 13 months. They are more or less the same size now, but there have been physical developement issues. Caleb (the smaller twin at birth) is about 2-3 months behind Aden in everything physical. His muscles seem weaker and his balance is not as developed as Aden's. I don't worry about this anymore though. Caleb will be walking by 14-15 months I'm sure. He crawls like a pro and stands up a lot. I have read that TTTS can cause differences in physical development during infancy, that is why I mention it.
Since the birth of my sons I have done much reading on TTTS and I am shocked that my OB never told me anything about it. Because in fact my boys did have a mild case that was luckily not life threatening. I think he didn't tell me so that I wouldn't worry. I don't appreciate that he kept me in the dark about something so serious.
I hope that anyone who's babies have this condition...are given the information they deserve and that all is well. Take care of yourselves and eat well. Best wishes.

I just sent you a private message about your boys' mirror imageness. My girls suffered from TTTTS. It was mild, thank G-d and at 33 wks and a few days (I want to say 33.5) they were delivered by C-section. I was monitored since I was 16 wks when they suspected the syndrome. My girls were born at 4lbs 15oz and 4lbs. 3oz. It's amazing how a few oz can make such a difference. My small baby is 3lbs lighter than her sister and though they look a lot alike one's face is narrower and thinner. Like she is a smaller version of her sister.
My big baby, Olivia, was able to sit up longer and did so first.
Just wanted to let you know there are others out there who have suffered a mild case of TTTTS.
Love, elle
(tried to email you to include a picture but it doesn't allow me to)

[*Sheryl*]

I PMed you back. I'm not completely positive but I think I read that mirror image twins inutero share a placenta and have two amnions. I'll have to look it up again. It has to do with the way the egg splits. The earliest splitting egg presents with two placentas and two amnions. The second earliest split presents one placenta two amnions and the latest splitting egg presents conjoined.
It is twins who share a placenta that can have TTTTS. I'm not sure what the connection is between mirrored and TTTTS but I think there is. There is such limited information out there.

[luckee4317]

I know TTTS can be a serious complication and we were very fortunate to have had a mild case which was not diagnosed until their delivery at 35 weeks. Our girls are now 5 years old and amazingly, the donor twin who was born at 5 lbs 1oz still weighs one pound less then her sister who was born at 6 lbs. They aren't typical TTTS babies though. The donor twin had done everything first when they were infants and is now almost an inch taller then her sister.

We never did much research on TTTS until recently since our daughters were healthy. Everything we have read about TTTS indicates the twins must be identical. We had been debating for years whether or not they are. What confuses us is that after they were born and were sent to the NICU, we were talking to the doctor about their health. He said they were healthy and the only concern they have right now is that the donor twin has an iron deficiency and the recipient twin has excessive iron and can develop jaundice if they have different blood types (which they don't). How could they have different blood types if all TTTS twins are identical? Is it possible to transfer blood though the placenta if they are not identical? Has anyone ever heard of this? Are there other complications that can mimic TTTS?

Of course the curiosity has gotten to us after five years and I ordered a DNA test kit today to resolve the issue if they are Fraternal or not. Twins did not run in our family but now we have three sets of twin girls (all "natural") between my sister, my 1st cousin and myself. This has only added to our confusion.