There are so many things I want you to know about Twin to Twin Transfusion Syndrome (TTTS).
As those of us who advocate for more knowledge on the subject say, “Awareness saves lives!”
Five key facts about TTTS:
- TTTS can happen to anyone who can get pregnant… that is, identical twins can happen to anyone. They don’t know why the egg splits. So, there is a good chance that you will know someone at some point carrying identical twins.
- TTTS results in the death of more babies each year than SIDS.
- In studies examining the mothers whose twins developed TTTS, the one commonality that they could identify (per a study by Dr. deLia) is a protein deficiency. So, if pregnant with IDs, drink your boost or ensure shakes, slowly throughout the day.
- Side lying rest really IS effective for TTTS. When a pregnant mother lies on her left side, it allows for optimal blood flow to the babies. This is especially important for the donor baby.
- The mother CAN have symptoms. Here is a list of TTTS symptoms the mother may display.
TTTS took my twin
Tiny’s Story
Tiny was the donor baby. Therefore, she was not receiving enough fluids.
At diagnosis (20 weeks gestational) she was 50% too small. The doctors gave her a 0% chance of survival.
Over the next ten weeks, she grew slowly.
At birth at 31 weeks, 5 days, she was the size of a 25 weeker. But she had the developmental advantage of a 30 weeker.
Her twin succumbed to the disease. Overwhelmed by the excess fluids and hydrops, (severe fluid build up in her body cavities, primarily her abdomen and around her heart) proved to be too much for tiny body.
Tiny, however, fought hard. She beat the odds. She lived.
So now you know about TTTS.
Do something for me. If you ever know of someone pregnant with identical twins, please make sure they know about TTTS. It’s frightening how many OBs do not!
You’ll find more information on Twin to Twin Transfusion Syndrome here.
Sharing is caring! 🙂
katbiggie
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Jamie@SouthMainMuse says
July 2, 2013 at 10:46 amSo glad you joined us and this is such important information. I think I told you my neighbor lost twin boys of triplets to TTTS. So very sad. They have a beautiful daughter who mentions missing and talking to her brothers in heaven.
Jamie@SouthMainMuse recently posted…Getting the static out of an elevator pitch for your blog.
katbiggie says
July 2, 2013 at 12:08 pmThank you Jamie. Yes, I do recall you telling me that. How sad to lose two of three! We talk about Kathryn all the time too.
Laura says
July 2, 2013 at 11:02 amOh wow, I had not even heard of this. 🙁 I’m so sorry for your loss, but I think that spreading awareness is an important aspect of conquering any loss from any disease. I have a cousin who is pregnant with twins, but after reading this, I can’t for the life of me remember if it is identical or fraternal twins. But I will definitely ask her, and pass along the info. if necessary. If there is any kind of prevention possible, I’m sure she will want to know it. (the Ensure/Boost idea and the side-lying sound very helpful). Thank you for being brave and strong enough to share this.
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katbiggie says
July 2, 2013 at 12:07 pmThank you very much for your kind words. Yes, definitely pass the info if it is relevant! Looking forward to following you through 31DBBB
Laura says
July 2, 2013 at 1:04 pmYou too!
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Mariann says
July 2, 2013 at 12:26 pmBefore reading this post, I’d NEVER heard a single things about TTTS. I will be certain to pass this information on to every hearing ear that I can find! Thanks for sharing so valuable information with all of us!
SITS
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another jennifer says
July 2, 2013 at 12:33 pmMy hair stylist is pregnant with twins. I will share this info with her for sure. That second stat is amazing. We hear so much about SIDS and how to prevent it, why not TTTS? Off to share!
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katbiggie says
July 2, 2013 at 12:39 pmThanks Jennifer!
IASoupMama says
July 2, 2013 at 12:39 pmHey, there — I’m a twin mama (they’re 2) and am so glad that you’re posting such valuable info. I’m so very sad that you lost one of your wee ones to TTTS — I can’t imagine.
I always feel so very fortunate that my twins were di/di fraternal girls. Pregnancy with them was hard enough, I couldn’t imagine the extra worry of carrying mono/di or mono/mono twins. My heart breaks for you…
Much love!
IASoupMama recently posted…7 Ways to Celebrate Turning 40
katbiggie says
July 2, 2013 at 12:44 pmMy surviving twin will be 2 in December. All multiples pregnancies are tough… thank you for your sweet words.
Mamarific says
July 2, 2013 at 3:09 pmWow, I had never heard of this. Thank you for educating me! Very sorry for your difficult loss.
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katbiggie says
July 2, 2013 at 7:22 pmThank you for taking the time to read and learn!
that cynking feeling says
July 2, 2013 at 4:40 pmI’m visiting from the yeah write #31dbbb. I think this post shows how useful a list can be. You presented information about a new-to-me topic in a very easy to understand way.
that cynking feeling recently posted…Read ‘em and weep
katbiggie says
July 2, 2013 at 7:22 pmThank you so much. I appreciate the comment.
J Lenni Dorner says
July 2, 2013 at 5:39 pmStopping by from YeahWrite 31dbbb.
@JLenniDorner
That is interesting. Is it only twins? I ask because I know someone who had triplets, but only 2 babies survived. (The third died a few days later.)
J Lenni Dorner recently posted…Love in an elevator
katbiggie says
July 3, 2013 at 6:13 pmIt can happen in any multiples in which 2 of them are identical twins. I know many who have lost 1 – 2 of their triplets due to TTTS. All multiples pregnancies are high risk though, with or without TTTS.
Kerstin @ Auer Life says
July 2, 2013 at 7:52 pmI have never heard of TTTS before and this is a very interesting, albeit heartbreaking post. I can barely handle reading about mothers losing their children, just gut wretching. You still managed to write a very informative post about it and have my complete admiration for that (and for going through what you did as well!)
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katbiggie says
July 2, 2013 at 10:35 pmI really appreciate those comments Kerstin. I am dedicating to helping others in the hopes that we may help someone to avoid going through what we did! Thanks for stopping by.
Lady Jennie says
July 3, 2013 at 3:24 amSo, to better understand, the donor baby who was given a 0% chance of survival was the one who survived, while her twin did not? Is that also common?
I’m sorry if I’ve mixed the facts up.
And – hugs.
Lady Jennie recently posted…Life in the Trenches – Chapter 26
katbiggie says
July 3, 2013 at 11:14 amYes. There is all kinds of craziness with TTTS. Many times it is the donor baby that dies because they are so much smaller and not getting the fluids. However, in our case (and again, many others) the excess of fluids to Kathryn, the recipient, caused her to to have congenital heart defects, and she developed hydrops which causes the fluids to build up in her body cavities. So although she, under the best circumstances, would have been the more likely one to survive, once her hydrops worsened, and her heart condition worsened, her chance of survival lowered way down. For a long time, it was unlikely either baby would live. We are very blessed to have walked away with one.
Hilary says
July 3, 2013 at 6:40 amI am so sorry for your loss. Thanks for sharing your story. I never heard of this…
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katbiggie says
July 3, 2013 at 11:11 amThank you, I appreciate your words of sympathy.
Rebekah Johnson says
July 3, 2013 at 12:52 pmSorry for your loss. TTTS is a terrible disease!
I was fortunate enough to have a doctor who caught it early. We had surgery in Houston. I have two girl survivors and my husband and I feel very blessed.
Have a great 4th!
Mariann says
July 3, 2013 at 5:09 pmThis is my first time EVER hearing anything about TTTS. I’m sorry for your loss and your family’s loss, at the same time I am so glad that you’re an advocate and that you’re spreading the word. I will use all of my social media outreach to also spread awareness! I look forward to staying connected with you and all of your efforts!
Mariann recently posted…Mirena Is Driving Me Bat Crazy…..I Think?!
Elizabeth Lee says
July 4, 2013 at 11:47 amI had heard of TTTS before, but I did not know that the mother had symptoms as well. I’ll certainly share the information if I have the opportunity. I’m so sorry for your loss.
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Dr. Dawn says
September 13, 2018 at 1:55 pmI´m going to have babies. And some of the symptoms you mentioned made me have my doubts.
Just out of prevention I think I´m going to pay a visit to my doctor.
Prevention always comes first