If you or someone you know/love is going through TTTS please contact the TTTS Foundation at tttsfoundation.com
You can also call 800-815-9211 or write tttsfound@aol.com
The facebook page is tttsfoundation@groups.facebook.com
In Addition, December is TTTS Awareness Month put on by the TTTS Foundation. Here are 31 facts about TTTS for each day of the month. Please comment with any questions, or visit the Foundation Website.
I’m re-posting from the International TTTS Awareness Month 31 day challenge put on by the TTTS Foundation.
Day 1
Twin to Twin Transfusion Syndrome (TTTS) is a disease of the placenta that affects identical twin pregnancies (or higher gestations) who share a placenta (monochorionic.) The shared placenta contains abnormal blood vessels which connects the umbilical cord and circulation of the twins. The events in TTTS are all Random. TTTS is not hereditary. TTTS has also been reported in dichorionic twins, two placentas, however this is felt to be extremely rare.
Day 2
Soon after the embryo splits after conception, usually between 4 – 8 days, the umbilical cords randomly attach to the placenta and the shared blood vessels in the placenta form in such a way that it is predetermined TTTS will progress at some gestational week. No one knows why an embryo splits, so they do not know why TTTS happens. The later in days after conception that the embryo splits, the more complications that can happen.
Day 3
The placenta is the only biologic structure that can cause the death or injury of more than one person at the same time. TTTS can occur at any time during pregnancy, even while a mother is in labor at term. The placental abnormalities determine when and to what degree a transfusion occurs between the twins.
Day 4
TTTS is caused by an unequal flow in “shared” blood vessels, but the pregnancy may also be further complicated from the babies having an unequal share of the placenta, which is something different. Placental share is determined by “independent” blood vessels to each baby’s cord. Unequal placental share contributes to a size difference between the babies, may force an earlier delivery if the baby stops growing, and may contribute to the baby’s passing after laser surgery, as the shared vessels are cauterized and the baby may not have enough placental share to continue growing.
Day 5
TTTS is caused by abnormalities in the placenta predetermined after conception and is the fault of no one. TTTS is not caused by anything the parents did or did not do, nor is it anything the babies do to each other. The babies are innocent bystanders. TTTS should never be explained as one baby stealing blood/nutrients/food from the other because it is not true. TTTS can happen to anyone.
Day 6
It is crucial to determine by ultrasound if you are pregnant with multiples by 6 – 8 weeks gestation. If you are, you must IMMEDIATELY ask, “Is there one placenta or two?” If there is one placenta, you are at risk for TTTS and you must transfer into the careof a high risk Maternal-Fetal Medicine Specialist. It remains important even with two placentas never to rule out TTTS, although extremely rare.
Day 7
Today, December 7th, is World TTTS Awareness Day. Please share this picture and light a candle at 5:10 and 5:15 pm in all time zones, for the recipient and donor babies as we send a wave of light, love, honor and remembrance all across the world. The TTTS Foundation and World Awareness Day was started from a mother’s love and a mother’s promise kept to her twin sons Matthew and Steven, the two little boys that started the fight against TTTS.
**Happy Birthday Matthew here on earth and Happy Birthday Steven in heaven.**
Day 8
If you are pregnant with monochorionic twins, you need WEEKLY ULTRASOUNDS from a high risk Maternal-Fetal Medicine Specialis by 16 weeks through delivery of your babies to check for any signs of TTTS. You need weekly ultrasounds until birth even if you are never diagnosed, simply because your placenta is monochorionic.
Day 9
There is a huge misconception that the risks of TTTS goes down after a certain gestational week. THERE IS NO SAFE ZONE FOR TTTS. The babies are at risk the entire pregnancy until the last baby’s cord is clamped at birth.
Day 10
Approximately 1 in 5 monochorionic pregnancies or 20% will develop TTTS at some point of the pregnancy. The severity of TTTS is determined by the number, type and direction of the connecting vessels in the placenta where blood can be transfused disproportionately from one twin (the donor) to the other twin (the recipient.)
Day 11
TTTS causes the ‘donor twin’ to have decreased blood volume. This in turn leads to slower than normal growth then its co-twin, and poor urinary output causing little to no amniotic fluid. The baby can pass away from heart failure due to severe anemia.
Day 12
TTTS causes the ‘recipient twin’ to become overloaded with blood. This excess blood puts a strain on this baby’s heart to the point that it may develop heart failure, and also causes this baby to have too much amniotic fluid. The baby can pass away from heart failure due to an overloaded cardiovascular system.
Day 13
Chronic TTTS usually occurs at 12-26 weeks’ gestation. These diagnoses are the most serious because the babies are immature and cannot be delivered. In addition, the babies will have a longer time during their development in the womb to be affected by TTTS abnormalities. Without treatment, most of these babies will not survive, and of the survivors, most would have handicaps or birth defects.
Day 14
Acute TTTS describes those cases that occur suddenly. not over time whenever there is a major difference in the blood pressure between the twins. This may occur in labor at term, or during the last third of the pregnancy whenever one twin becomes gravely ill or even passes away as a result of the abnormalities in the shared placenta.
Day 15
TTTS is the #1 life-threatening condition affecting multiples. It is a misconception to say TTTS is rare.
Day 16
Without treatment of intervention, TTTS has an 80-100% mortality rate.
Day 17
TTTS results in the loss of more babies than SIDS (Sudden Infant Death Syndrome)
Day 18
WARNING SIGNS OF TTTS IN MOTHER INCLUDE: rapid growth of the womb, a uterus that measures large for dates, abdominal pain, tightness or uterine contractions, sudden increase in body weight, and swelling of hands and feet.
Day 19
WARNING SIGNS OF TTTS IN THE TWINS INCLUDE: same sex twins, one single shared placenta, a thin, hard to see dividing membrane, more than normal amounts of amniotic fluid in one sac, and less than normal to zero amniotic fluid in the other.
Day 20
There is an international crisis among OB/GYN’s who refuse to refer their patients to the high risk doctor because it is a status symbol for them to care for multiple birth pregnancies. ALL pregnant mothers with monochorionic twins need to be in the care of a Maternal-Fetal Medicine Specialist.
Day 21
Many OB/GYN’s think that your babies are fraternal if there are 2 sacs, only do u/s every 4-6 weeks, feel TTTS is ‘rare’ if they even know of the disease and therefore will not believe you if you call saying you are “in pain,” have “gained a lot of weight” or “feel like you are going to burst.” The ignorance among OB/GYN’s puts babies’ lives in danger and your symptoms will only be “heard” as normal pregnancy complaints.
Day 22
It is a misconception to be told that if your babies are different in size during a monochorionic pregnancy, that your babies will get TTTS. A size difference of 20% or less is normal. A size difference can also come from unequal placental share, a 2 vessels umbilical cord instead of 3, and/or a cord insertion problem. Babies can have severe TTTS and be the same size.
Day 23
It is a misconception for a doctor to be able to tell you what your placenta share is during a pregnancy with TTTS. The placental share to each twin is only a guess until your placenta is professionally analyzed by a pathologist after birth. ALWAYS ASK FOR YOUR PLACENTA TO BE SENT TO PATHOLOGY TO DETERMINE THE NUMBER AND DIRECTIONS OF FLOW OF THE SHARED VESSELS AND WHAT THE PLACENTAL SHARE IS TO EACH TWIN. ( You can do this is if you have laser with your laser center or ask your MFM/Delivery Doctor.)
Day 24
TTTS is diagnosed by ultrasound. If you have an ultrasound every two weeks, you are increasing your risk of being diagnosed at a later stage with more dire outcomes, as well as possibly missing an opportunity for laser surgery. Weekly ultrasounds are crucial to diagnosing TTTS at the earliest possible chance.
Day 25
If you know anyone pregnant with multiples, please contact them today and tell them about TTTS. Never be afraid to reach out and give them the gift of education. This gift will empower them and give them strength and hope, not fear.
Day 26
(We will be explaining the Stages of TTTS)
Stage 1 TTTS is diagnosed on ultrasound when the deepest vertical pocket of amniotic fluid around one twin is greater than 8 cm and the deepest vertical pocket is under 3 for the other twin. This is called polyhydramnious and oligohydramnious.
Day 27
Stage 2 TTTS is diagnosed on u/s when one twin, the donor, does not show a visible bladder within 30 minutes of examination.
Stage 3 TTTS is diagnosed on u/s when the Doppler’s are not normal. Abnormal blood flow shows in the umbilical cords and/or hearts of the twins.
Day 28
Stage 4 is diagnosed by ultrasound showing swelling under the skin and hydrops, signs of heart failure, in the recipient baby who has more than normal amounts of amniotic fluid around it.
Stage 5 is the terrible, heartbreaking loss of one or both twins.
Day 29
TTTS is a powerful disease, but it is not stronger than a mother’s love. TTTS is like a tornado. It comes without warning and you can only hope and pray that you are not in the center of its’ path. Even if this devastating experience results in the loss of one or both of our babies, it still will not take them from us. We will always be the parents of twins.
Day 30
The official ribbon for TTTS is a baby blue with 2 or 3 white daisies at the cross of the ribbon, because we are fighting for the day AFTER the storm, when the skies are blue again and the babies who suffered from TTTS are surviving and thriving, happy and at home with their families just like the beautiful daisies blooming, growing and flourishing in the fields.
Day 31
The TTTS Foundation has dedicated the last 24 years to ending this disease as a promise to 2 little boys, Matthew and Steven, who started the fight against TTTS. We have directly helped over 16,000 families. If we don’t see an end to this devastating disease, then there can be no hope to a cure. We not only see the end, we won’t stop fighting until that day is here. I PROMISE!
