December 7 is World TTTS Awareness Day. As a pediatrician, member of the TTTS Foundation’s Medical Advisory Board, and mother of monochorionic twins (twins with a single placenta), I share the TTTS Foundation’s passion for combating TTTS through public awareness. Whether you are pregnant with twins or know someone pregnant with twins, please read this article for important information about TTTS.
What is Twin to Twin Transfusion Syndrome (TTTS)?
TTTS occurs in roughly 15% of twins who share a placenta (called monochorionic twins). It’s important for every family pregnant with twins to find out early in their pregnancy if their babies share a placenta. If your twins do not share a placenta, they are not at risk of TTTS.
In twins who share a placenta, it is not unusual for there to be blood vessel connections between them. Normally, these connections retain a reasonable balance of blood flow to and from each baby. However, in TTTS, the blood flow between the twins becomes unbalanced. The placenta sends too much blood to one baby and too little to the other. One twin becomes overloaded with blood while the other becomes anemic. Left undetected and untreated, TTTS can be life-threatening for one or both twins.
Why is TTTS awareness is so important?
TTTS is a life-threatening condition, but it does not have to be life-taking. Medical advancements have resulted in excellent outcomes for twins who are diagnosed and treated early. The earlier TTTS is detected, the better the outcome– hence why awareness of TTTS is so vital.
The most important thing parents can do is educate themselves on the signs and symptoms of TTTS. Research has shown excellent outcomes for twins with TTTS when parents and doctors are educated about TTTS and are actively monitoring for signs of TTTS.
What are the physical signs of TTTS?
- Sudden increase in weight gain.
- Sudden sensation of the abdomen being tight or uncomfortably stretched.
- Decreased movement of one or both babies.
- Hand or feet swelling early in pregnancy.
- Contractions before your due date.
Though the signs above may be associated with other conditions, it’s important that pregnant mothers with these symptoms seek medical attention to rule out TTTS.
How is TTTS diagnosed?
If your twins share a placenta, it is vital from the beginning that a doctor who has expertise in managing twins with TTTS is involved in your care. Even though your twins may never develop the condition, it’s important to have a doctor involved who knows how to detect and treat TTTS should your twins develop it. Typically, perinatologists (OB/Gyns who specialize in high-risk pregnancies) are well-trained in the management of TTTS. If your doctor is not a perinatologist, you can continue to see your doctor while also seeing a perinatologist for consultation.
TTTS is diagnosed by ultrasound. Twins who share a placenta require frequent ultrasounds to monitor for TTTS. Ultrasound findings that may suggest TTTS in twins who share a placenta include:
- Amniotic fluid measurement is less than 3 or greater than 8 centimeters.
- Weight difference of more than 20-25% between the babies or slowed growth in one or both babies.
- Marked difference in bladder size or the inability to see the bladder of one baby.
- Signs of body swelling or heart thickening in a baby.
More information on TTTS
Every parent with twins who share a placenta (whether or not they have been diagnosed with TTTS), should contact the Twin to Twin Transfusion Syndrome Foundation right away. The TTTS Foundation has great information on their website. In addition, they will send written information about TTTS to families and their doctors. Because early detection is important in the treatment of TTTS, families should contact the TTTS Foundation as soon as they discover their twins share a placenta. Though the majority of twins will never face TTTS, knowing about TTTS will allow parents to actively monitor and detect it early should it occur.
Fortunately, advances in medical technology have resulted in increasingly better outcomes for babies affected by TTTS. Treatments for TTTS include amnioreduction and selective laser photocoagulation. You can find out more about each of these and other treatments at the TTTS Foundation website. If your twins are diagnosed with TTTS, it’s important to discuss each treatment option with your doctor. The TTTS Foundation can help facilitate discussion with your doctor by providing you with some important talking points. In addition, if your doctor is not an expert in managing TTTS, the TTTS Foundation can help you and your doctor find a TTTS expert who can provide consultation to you and your doctor.
About the TTTS Foundation
The TTTS Foundation was founded by Mary Slaman-Forsythe in 1989 with the mission to combat TTTS through early detection and treatment. Mary and her foundation have helped countless families affected by TTTS. December is TTTS Awareness Month, the same month Mary’s twins, Matthew and Stephen were born. I had the good fortune of connecting with Mary during my pregnancy and through the writing of Twins 101. Mary is an energetic, knowledgeable, and compassionate mother who is an international expert in TTTS. She is a wealth of information and gives great pep talks too. Please don’t hesitate to contact her should you have any questions about TTTS.