Frequently Asked Questions
It is crucial to be in the care of a MFM doctor to confirm the answers to these questions. You should get your first ultrasound by 6-8 weeks, but no later then 12.
1. Is the placenta monochorionic (MC)?
2. Are the babies the same gender?
3. Can you see the dividing membrane?
4. Is the placenta anterior or posterior?
5. Do the umbilical cords have 3 blood vessels or 2?
6. How did the umbilical cords insert into the placenta?
Have your MFM confirm the answers to the below questions. Your ultrasounds must be weekly (starting at 14 weeks through delivery) even if you are not diagnosed.
7. What is the maximum vertical pocket (MVP) of amniotic fluid for each baby?
8. Is the bladder visible in the donor baby?
9. What are the weights of the babies in grams (every 2 weeks is OK) and what percentile is each baby using a twin growth chart?
10. Are the babies growing at the same rate or is there a significant difference?
11. Are the umbilical cord and the middle cerebral artery (MCA) normal for both babies? Is one side of the placenta thicker and paler? Do you see a starry pattern on the livers?
12. Is the heart of the recipient baby enlarged or thickened?
13. Does the recipient baby show hydropic (edema) changes?
14. What is the fundal height?
15. How long is your cervix by ultrasound and is it showing any signs of funneling or thinning?
For more information visit The TTTS Foundations 15 Most Important Questions to Ask in Monochorionic Pregnancies page. These questions are CRUCIAL to diagnosing or ruling out TTTS, including TAPS, SIUGR and TRAP.
TTTS, or twin to twin transfusion syndrome, is a disease of the placenta (or afterbirth) that affects identical twin pregnancies. TTTS affects identical twins (or higher multiple gestations), who share a common monochorionic placenta. The shared placenta contains abnormal blood vessels, which connect the umbilical cords and circulations of the twins.
The common placenta may also be shared unequally by the twins, and one twin may have a share too small to provide the necessary nutrients to grow normally or even survive. The events in pregnancy that lead to TTTS – the timing of the twinning event, the number and type of connecting vessels, and the way the placenta is shared by the twins are all random events that have no primary prevention (see section on The Monochorionic Placenta), is not hereditary or genetic, nor is it caused by anything the parents did or did not do. TTTS can happen to anyone.
For more information visit the Diagnosed with TTTS page.
TAPS, or twin anemia polycythemia sequence, is a form of TTTS but is different in that TTTS involves an unequal sharing of blood volume (creating a amniotic fluid difference) and TAPS creates an unequal sharing of red blood cells only (no amniotic fluid difference).
The blood vessels that are shared with TAPS between the babies in the placenta are very small (less than 1cm in size) where the blood vessels that are shared between the babies in the placenta with TTTS are larger. We compare them visually like dental floss to yarn.
Because there are no physical signs of TAPS in the mother, she MUST have MCA (or middle cerebral artery) Dopplers at every ultrasound starting at 16 weeks through delivery of the babies. Other signs to look for on ultrasound would be a thicker and darker side of the placenta compared to a paler thinner side. There can also be what is called ‘starry liver’ or white spots on the liver of one baby.
The most important part to understand is that you must have MCA dopplers at each ultrasound and that the babies could look perfect (normal weights, bladders seen, amniotic fluid levels in the normal ranges), but you have severe TAPS.
We call TAPS the silent killer because you could lose your babies before you ever had a chance to save them. This is why we use #TAPSisSILENT.
For more information visit the Diagnosed with TAPS page.
There is a great misconception that all babies who are born dark and pale are babies suffering from TAPS. This is not true. The answer is that it can be TAPS or it can be Acute TTTS. Parents need to be educated to make sure that bloodwork is immediately taken after delivery for the hemoglobin counts but more specifically the reticulocyte counts. Since TAPS occurs slowly over time, you will see the reticulocyte levels (immature red blood cells) increasing to try and compensate for the low levels of red blood cells in the anemic donor baby. Time is needed for this to happen. Acute TTTS occurs quickly compared to Chronic TTTS which happens over time. For this reason, there is not enough time to accumulate the reticulocytes. However, there are still great differences in the hemoglobin levels of babies suffering from Acute TTTS resulting in dark and pale babies. So, it is crucial to determine the reticulocyte levels to determine if they are very different between the babies or similar.
It is also crucial to have the placenta analyzed and injected with dye to identify the smaller vessels that are responsible for TAPS and the larger vessels to create TTTS.
The doctor can also flip the placenta over to the maternal side. If the maternal side of the placenta is pale on one side and dark on the other, that is characteristic of TAPS. If the placenta is more of an even coloring, that is characteristic of TTTS.
TAPS donor babies are more used to being anemic because again, TAPS is chronic, over time. TTTS donor babies, however, have become severely anemic very suddenly. Due to this difference, how you treat the babies are different and more urgent with the TTTS donor babies.
The TTTS Foundation helps families every day with TAPS. TAPS is a silent killer and we are passionate about empowering parents and are dedicated to continuing to increase awareness to save lives before it is too late.
For more information on TAPS visit the Diagnosed with TAPS page.
Yes, when you have TTTS the amniotic fluid increases in the sacs of the recipient baby who receives more than normal amounts of blood. The measurement is called the Maximum Vertical Pocket or MVP which normally is between 2-8cm. When the pocket goes over 8cm you will start to feel larger. We have helped mothers as high as 22cm which is dangerously high. If you have not been pregnant before, even 8.1cm may cause discomfort. If you have had a baby before, you may be able to handle a 10 or 11cm pocket because your uterus has already stretched before.
Every placenta is unique in the placental share to each baby and the number and direction of flow of the shared blood vessels creating a unique diagnosis for each mother. The physical symptom you will experience will be from weight gain, to pain that doesn’t go away or a pattern of pain, shortness of breath, a feeling like you are a ‘balloon ready to pop’, trouble moving from side to side in bed, possible edema and feeling thirsty, and your clothes not fitting when they did the day before. You will feel a sense of panic and will cry not understanding why you feel this way and belief that you can’t possibly go another day yet alone months more in your pregnancy.
You will also start to hear numerous comments about how big you are and it looks like you are going to deliver any day. Without the knowledge of TTTS, you might hear ever from the lady that answers at your doctor’s office that “This is normal, you have just never been pregnant before” or “This is normal, you just have never been pregnant with twins before.” With the knowledge on our side and through talking with us, you will know this is not normal. You will know what to do and not to wait another day before doing it! Please call us and we will help you!
For more information on TTTS visit the Diagnosed with TTTS page.
No, this is why we call TAPS the silent killer. There are no physical symptoms in the mother because it is not the volume of blood shared through the connections, but the red blood cells only. There is not an amniotic fluid problem. Your babies could be passing away and you would never have had the chance to save them.
You must have MCA Dopplers done with ultrasounds by a MFM specialist weekly from 16 weeks even when the babies look perfect. The MCA Doppler can diagnosed or rule out TAPS.
There are secondary signs to look for on ultrasound. A TAPS donor baby may show a lighter color and echogenic or thicker placental share and/or an enlarged heart (cardiomegaly). For a TAPS recipient baby you might see a starry sky liver (appearing to have white marks on it like stars).
For more information on TAPS visit the Diagnosed with TAPS page.
SIUGR, or selective intrauterine growth restriction, is a form of TTTS (twin to twin transfusion syndrome) where after the embryo splits to make identical twins, the blood vessels form in such a way that one baby has more placental share to nourish it than the other and becomes under the 10th percentile in growth.
Usually in pregnancy, you have 1 baby and 1 placenta to nourish the baby. With SIUGR, you have two or more babies sharing 1 placenta and randomly, the placenta forms with one baby having a very small percentage of it.
The pregnant mother must be in the care of a Maternal-Medicine Specialist (MFM) for weekly ultrasounds starting at 16 weeks to look for TTTS and TAPS, but also to get a good history of weight and growth by weighing the babies every 2 weeks to diagnose or rule out SIUGR.
The small baby can have issues with SIUGR such as blood flow problems as well as cord insertion problems becoming life-threatening for the baby in addition to having a small share of the placenta. In severe cases, laser surgery to cauterize the connection vessels in the placenta may be done to help the blood flow issues. Some mothers, however, opt out of the surgery for fear the placenta share is just too small to risk losing the baby.
Delivery of the babies becomes largely determined by what gestational week the smaller baby stops growing. Standard of care is often to admit the mother until birth starting at 24 weeks or earlier to watch the smaller baby more closely.
You can have TTTS, including TAPS and SIUGR all at the same time.
For more information visit the Diagnosed with SIUGR page.
TRAP, or twin reversed arterial perfusion sequence, is a form of TTTS (twin to twin transfusion syndrome) where one twin has not fully developed and the other twin is pumping his or her heart for both babies.
TRAP may be diagnosed as early as 11 weeks with the use of 3-D and 4-D ultrasound and doppler flow patterns.
After the embryo splits to make the two babies, an artery of the healthy twin perfuses or forms to the artery of the other baby who sadly did not completely develop. This baby will not survive after birth and may pass away earlier in-utero.
If the underdeveloped baby grows to more than half the size of the other baby, a laser surgery can be done to close the shared vessels in the placenta reducing the healthy baby’s heart overload to save this baby from also passing away.
TRAP occurs in approximately 1 out of 100 pregnant moms with monochorionic twins and 1 out of 135,000 deliveries.
TRAP is a heartbreaking expression of the twin bond and forever love for each other because one twin does everything possible to save his or her twin.
For more information visit the Diagnosed with TRAP page.
The TTTS Foundation was founded by Mary Slaman who suffered incredibly in her identical twin pregnancy. She made a promise to her twins the night they were born December 7th, 1989 that they would be known and remembered and that she would find the answers. Little Steven passed away and his twin brother Matthew survived and is on the Board of Directors. Mary has dedicated her life to directly helping families all over the world, over 30,000 of them and counting, with hundreds of thousands more through social media.
Mary will speak directly with you to help educate you and empower you to create a medical plan and back-up plan. We also have other parents to talk to based on your situation as well as relationships with every laser center. With medical specialists providing almost 40 years of studies and expertise combined with other families having direct experiences like Mary, The TTTS Foundation has knowledge, compassion, dedication and relentless fight like no other.
The TTTS Foundation provides grants to families in financial need, sends out care packages for bereavement and NICU families and surrounds families with incredible support through groups on Facebook for at-risk families, diagnosed families for TTTS, TAPS, SIUGR, and TRAP, NICU, special needs, and sadly loss of one and loss of all babies.
We are passionately dedicated to increasing research and making sure that the standard of care includes weekly ultrasounds from 16 weeks through delivery of the babies and that families get into the care of a Maternal-Fetal Medicine (MFM) Specialist . We have been fighting for 32 years for the diagnosis not just to be of twins, triplets, quads or more, but monochorionic, dichorionic, trichorionic or more. It is crucial to know how many placentas there are diagnosed from an MFM specialist and to always assume there is only one if it cannot be determined,
We care about every single family who reaches out to us and every single baby is cherished and meant to be. We are there for you in your darkest hours. You are not alone. Families give back many ways including participating in December’s International Awareness Month and Awareness Days of December 7th-World TTTS Awareness Day, December 8th-World TAPS Awareness Day, December 9th -World SIUGR Awareness Day and December 10th -World TRAP Awareness Day. Awareness saves lives and also provides a way for families to share their stories, express their love to their babies and educate the world.
If you or someone you know is going through TTTS, TAPS, SIUGR, or TRAP and need some encouragement, don’t hesitate to call us at 800-815-9211 or contact us using are contact form.
Yes, we have many active support groups that we run on Facebook as well as an incredible support team on Instagram. Some groups are private such as our bereavement, diagnosed and legal action groups in which you need to contact us to join. Here are the groups you can request to join right now-
The Twin to Twin Transfusion Syndrome Foundation TTTS including TAPS, SIUGR and TRAP (the official main group with thousands of members since 2009)
TAPS Support Group (twin anemia polycythemia sequence)
SIUGR Support Group (selective intrauterine growth restriction)
TRAP Support group (twin reversed arterial perfusion)
NICU Daisy Babies (neonatal intensive care)
Special Needs Support Group
Survivors Support Group
Please join our groups and share your babies with the support of many others who have been through this long before you and currently today with you. Our groups are compassionate and a safe place to fall.
Please also follow us on Instagram at @tttsfoundation. We would love to share your story, connect you with other families, and help you during your pregnancy.
Cervical Assessment, Nutritional Therapy and Bedrest
Nutritional supplementation, evaluation of the uterine cervix and bed rest in the mother with a multiple gestation are extremely important. Specific need for cervical assessment by ultrasound, increased protein and calories and bed rest may be even more important with a diagnosis TTTS, including TAPS, SIUGR and TRAP.
Recognition of these maternal issues will lead to better outcomes for the twins.
With few exceptions the pregnant woman’s health status is virtually ignored once the twins are determined to have TTTS. Both the doctors and couples focus on the ultrasound findings and condition of the babies. This section is to help you understand ways that mothers can immediately help even right after you have been diagnosed.
There are things that mothers can do to benefit the babies and themselves right away, which may play a role in the outcome of TTTS pregnancies. These are related to changes in diet and activity.
Dietary Changes
We at The TTTS Foundation suggest nutritional supplementation and have seen nutritional therapy benefit many women. They report less fatigue and more energy, and on occasion, the fetal signs of TTTS improve (less polyhydramnios) obviating the need for invasive therapy. Mothers also feel immediate satisfaction knowing that that there is something they can do right away to help their babies.
It seems that most women with TTTS at mid-pregnancy are found to be malnourished. Anemia, low blood protein, decreased calorie intake and dehydration are common findings. Many women with multiple gestations have morning sickness or poor appetites that may be worse than that seen with only one baby. It may be frustrating and upsetting not to be able to eat well.
This below normal intake of nutrients, combined with the needs of twin babies and some of the mother’s changes in TTTS (e.g., a womb that is more than twice the normal size for the time of pregnancy) may all contribute to the development of malnutrition. There are two unusual circumstances in TTTS that could make a mother’s weight go up despite decreasing your dietary intake. These cause inaccuracies in determinations of nutritional status when one weighs themselves on a scale:
- When the recipient develops polyhydramnios (excess amniotic fluid), this water in the womb adds to the mother’s weight.
- The second is also water weight, but this is the effect of swelling or edema that occurs throughout the mother’s body whenever your blood protein levels drop to abnormally low levels.
The Foundation has explored a number of ways for women to help solve this problem and found that the most efficient way to recover the losses, and prepare for the rest of the pregnancy, is to take liquid dietary supplements (e.g., High Protein Boost, Carnation Instant Breakfast, Ensure Plus, and others that are soy based) sipped slowly (on the hour), continuously throughout the day in addition to whatever you can eat at meals. We also recommend always eating food first and water last in meals and snacks. Water first may cause nausea as well as feeling full when you have not eaten anything yet. Food first, water last will help you gain true weight gain and reduce nausea.
If the morning sickness is still present, encourage your patient to try your best with the supplements and liquids until it passes. The sensation of thirst is also common, and seems unusual in the face of excess body water.
In addition to the fortified high protein drinks, we recommend soy milk or athletic drinks (e.g., Gatorade.) to provide more than just water for the mom and her babies.
Activity Changes
The benefits of best rest (or lying on a couch or the floor) in multiple gestation has always been debated by doctors. However, TTTS is a high-risk complication in which all possible beneficial remedies should be utilized to improve outcomes.
Horizontal rest should be used. Horizontal rest (on the mom’s side) will help blood flow and oxygen to the womb, and aid in removing some of the excess edema fluid in patient’s body. You have to remember that TTTS is a placental problem, not a baby problem. Laying on her side will increase blood and oxygen to help the placenta work at its best and that can be started right away.
Work is problematic for many women affected by TTTS. Studies have shown a definite relationship of physically demanding work to adverse outcome in pregnancy. Given the high-risk nature of a TTTS multiple pregnancy, we recommend a leave of absence for the duration, especially if the patient is undergoing treatments.
Dr. De Lia’s Research
Dr. Julian De Lia, one of our board members, pioneered the laser surgery. He has also investigated the nutritional aspects of TTTS. He recommends that his patients drink 3 cans per day of either Boost or Ensure High Protein (4 if she was sick early in pregnancy or with higher order multiples) in addition to their meals. Dr. De Lia explains, “TTTS patients at mid-pregnancy have severe hypoproteinemia and anemia.”
These maternal metabolic parameters may influence fetal TTTS characteristics and explain maternal sensitivity to intravenous fluid in complicated multiple pregnancies in general. We believe our data are sufficient to support the use of nutritional supplements in the management of early (monochorionic twins with subtle growth and amniotic fluid differences) and severe TTTS regardless of specific invasive therapy used (i.e., fetoscopic placental laser surgery, reduction amniocentesis, etc.)
Cerclages
The ultrasound machine can provide important information regarding abnormal cervical changes, before they can be detected by vaginal examination alone. Studies have shown that the shorter the cervix in twin gestation at mid-pregnancy, the more likely a premature delivery. In fact, Dr. De Lia showed that 30% of babies were saved simply from doing a cerclage when other doctors refused to do them! Cerclages have been performed on pregnancies with multiples as high as the 27th week in some centers. If a doctor refuses to do one, we can help a mom find someone that will.
Twin to twin transfusion syndrome is still being described by some as enigmatic and poorly understood. The recognition of the above maternal variables is exciting and we have no doubt that adding these to the TTTS paradigm will improve outcomes of TTTS babies regardless of therapy, whether directed at the placenta or the symptoms.
Nutritional supplementation, ultrasound assessment of the cervix (with cerclage placement when necessary), and horizontal rest are within the scope of any physician.
For more information on the treatments available for TTTS visit the TTTS treatment page.