Twin-Twin Transfusion Syndrome (TTTS)

What are the signs and symptoms of TTTS?

There are not many outward signs or symptoms of TTTS, as it is diagnosed by ultrasound.

Does the mother show any signs or symptoms of twin-twin transfusion syndrome?

In many cases, the mother will not experience symptoms of TTTS. However, some mothers whose twins have TTTS will feel signs of excess amniotic fluid, which can include:

• A uterus that measures large for her stage of pregnancy
• The feeling that the abdomen is growing or expanding rapidly
• A sudden increase in body weight
• Increased abdominal pressure or pain
• Shortness of breath
• Uterine cramping or contractions
• Swelling of the hands and legs early in the pregnancy

If you're pregnant with twins and feel any of these symptoms, contact your doctor immediately for further evaluation.

What are the potential effects of twin-twin transfusion syndrome?

Because of their differing blood supplies, each baby will face a different set of challenges and potential complications requiring expert care.

The complications that may occur when your twins have TTTS include:

• Selective intrauterine growth restriction (sIUGR): A more complicated state of TTTS where one baby may only have a small amount of the placenta
• Cardiomyopathy:  one or both of the babies can show signs of heart failure
• Premature labor
• A condition called twin anemia-polycythemia sequence (TAPS), where one fetus has a low blood count and the other has high blood count
• Loss of one or both babies

The donor baby may have signs of dehydration, such as little to no urination, which leads to low amniotic fluid levels. Urine is what makes up most of the amniotic fluid that surrounds a baby.

The recipient baby often experiences signs of over hydration, including increased urination, which leads to high amniotic fluid levels. Sometimes, the recipient baby may show signs of heart failure.

If TTTS is left untreated and becomes severe, there could be severe complications for the babies, including brain injury, heart damage or death.

At the Colorado Fetal Care Center, our fetal surgeons are available for consultation and treatment 24 hours a day, seven days a week. This round-the-clock service is important for parents and their babies, as the outcomes for babies with TTTS vastly improve with early treatment. Our maternal and fetal medicine specialists are skilled in addressing the complications that may affect one or both twins.

Potential TTTS complications in the recipient twin

With TTTS, the recipient twin is receiving more fluid and their heart is pumping against higher blood pressure. As a result, they're producing too much urine, which causes a significant increase in amniotic fluid. Other potential problems can occur in the recipient twin, including:

• Heart failure
• Demise or loss of the twin

Potential TTTS complications in the donor twin

Lacking fluid and blood, the donor twin is smaller and produces less urine, which causes a small amniotic sac. Other complications may occur, including:

• Weighing less than expected, a complication known as intrauterine growth restriction (IUGR) or fetal growth restriction (FGR)
• Demise or loss of the twin

What happens if one of the twins doesn't survive?

If TTTS causes just one of the twins to survive, it’s important that mothers know this is not their fault.

In this case, the surviving twin is at risk for brain and other organ damage, as pumping blood back to the deceased twin deprives the surviving twin of blood, oxygen, fluids and nutrients. Treatment prior to this occurring can help improve the chances for the other twin.

How do we diagnose twin-twin transfusion syndrome?

We can diagnose TTTS by ultrasound. The earlier we can diagnose the disease, the more likely we are to reach a positive outcome. We would like to start providing care within days of a diagnosis.

If you're pregnant with monochorionic-diamniotic twins, we recommend a fetal ultrasound at least every two weeks throughout your pregnancy once you’re past 16 weeks.

What happens after we receive a TTTS diagnosis?

If your twins show signs of TTTS, our multidisciplinary team will perform a complete evaluation including several fetal diagnostic tests. With this one-day evaluation, you will:

• Undergo an ultrasound and fetal echocardiogram
• Meet each member of your care team
• Be able to ask any questions you want

The evaluation consists of:

• Imaging your babies with a complete anatomy ultrasound by your high-risk obstetrician (maternal-fetal medicine doctor)
• An ultrasound of the heart (echocardiogram) by our fetal cardiologists
• A fetal MRI, if necessary

Based on your babies' ultrasound results, your care team will diagnose the severity of the twin-twin transfusion.

Understanding TTTS stages

Our fetal care experts use the Quintero staging system, which is a common scale used to find out the severity of TTTS. TTTS stages are described on a scale of one to five with five being the most serious.

TTTS stage one: Fluid imbalance where one baby has too much (polyhydramnios), and the other has too little (oligohydramnios)

TTTS stage two: The donor twin’s bladder will be empty when viewed on an ultrasound (absent bladder)

TTTS stage three: Uneven blood flow through the blood vessels or umbilical cord for one or both babies that affects heart function

TTTS stage four: One or both babies develop hydrops, which is unhealthy fluid buildup in different parts of the body, most often due to heart failure

TTTS stage five: One or both babies pass away

Once we determine the stage of your babies’ TTTS, we’ll explain what that means for your family, discuss treatment options and answer any questions you have.

Choosing twin-twin transfusion syndrome treatment options

The fetal medicine specialists at our Colorado Fetal Care Center focus on your family’s unique needs. We provide your family with clear counseling on:

• TTTS as a condition
• The specific severity of your twins' disease
• Options and recommendations for treatment
• Anticipated outcomes

Together, we’ll create a specialized treatment plan to ensure the best outcomes for you and your babies.

What are the treatment options for twin-to-twin transfusion syndrome?

At the Colorado Fetal Care Center, our doctors are experts at identifying and treating twin-twin transfusion syndrome.

We understand that receiving a TTTS diagnosis during your pregnancy can feel life-changing, but you'll have an entire team taking care of you and your twins. Our state-of-the-art facilities, extensive experience treating this condition and innovative treatment options can help your children thrive, both during pregnancy and after birth.

Time is critical when it comes to treating TTTS. The earlier we diagnose the condition, the better we can treat it. Many treatment options can start within hours or days of diagnosis.

Twin-twin transfusion syndrome treatment options

Observation and monitoring

Sometimes we recommend to closely monitor the condition because it is not severe enough for treatment. Your physician can usually perform the necessary monitoring but on occasion, it is done at the fetal care center. We usually take this approach in the early stages of TTTS or in cases where surgical treatment is not possible.

Amnioreduction

An amnioreduction is a procedure where a doctor removes extra amniotic fluid from the amniotic sac using a small needle with ultrasound guidance. The doctor removes just enough fluid to return it to a healthy level.

Performing an amnioreduction helps prevent preterm delivery and other complications related to polyhydramnios (too much amniotic fluid). The potential benefits of this TTTS treatment option include:

• Decreasing abdominal pressure
• Slowing the progression of the disease
• Improving blood flow between the babies
• Halting or even reversing the TTTS in rare cases

Laser TTTS surgery

In severe cases of TTTS, our fetal surgeons will recommend laser surgery. When this is the best treatment option, we usually perform this minimally invasive fetal intervention within 24 to 72 hours of your evaluation.

The laser TTTS surgery, called selective fetoscopic laser photocoagulation (SFLP), takes place in a dedicated operating room within the Colorado Fetal Care Center, so all your surgical care takes place in one location. Most of our mothers have an epidural before the surgery starts to ensure a painless procedure. We have a dedicated fetal anesthesiologist who is by your side every step of the way.

To perform the laser procedure, we insert a small camera into your uterus under ultrasound guidance. We use this camera to identify the abnormal blood vessel connections between the babies. Then, we use a small laser to block the abnormal vessel connections and definitively stop the harmful blood flow between the babies.

We usually also perform an amnioreduction after the TTTS surgery to remove any excess amniotic fluid.

Why choose our Colorado Fetal Care Center for TTTS diagnosis and treatment?

When coming to our Colorado Fetal Care Center for TTTS treatment, parents can expect an unparalleled level of expert, coordinated care. In fact, we are one of the nation's top care centers for treating TTTS.

Our 24/7 care model means that we’re here to provide thoughtful answers and handle whatever need you or your babies may have, no matter the time. Our center is always staffed with the pediatric, neonatal and maternal fetal experts you need to handle high-risk pregnancy and TTTS complications.

Not only do we offer some of the most advanced fetal therapies, but we're constantly advancing the field through innovative research. Because TTTS is a complicated disease and its causes are not yet understood, we collect detailed information on every TTTS pregnancy and investigate the underlying causes. This helps improve the outcomes for our patients and get a better understanding on how to offer the best treatment.

A continuum of care: comprehensive TTTS treatment

We understand the stress and fear that can go along with a TTTS diagnosis. This is why we have specialized maternal and fetal medicine experts for every aspect of you and your babies’ care.

Additionally, we're one of the few centers that brings together the full multidisciplinary care team from the very beginning, ensuring the most responsive and comprehensive care plan for before and after birth.

Twin-twin transfusion treatment after birth

With a Level IV (four) NICU and world-class pediatric experts right here on the Anschutz Medical Campus, we're able to ensure a smooth transition between the various providers involved in your care and any specialists your babies may need.

A multidisciplinary team of TTTS experts dedicated to you and your babies 

At the Colorado Fetal Care Center, you will meet the various team members who are all dedicated to you and your babies. Each person plays a unique role in coordinating your care, evaluating your pregnancy, diagnosing your babies' condition, counseling about treatment options and treating your family. We also help you feel like you're part of the care team by listening to your concerns, answering your questions and keeping you informed every step of the way.

During your appointment, you will meet nurse coordinators, medical assistants, fetal sonographers, fetal ultrasound specialists, anesthesiologists, fetal cardiologists and fetal surgeons, including pediatric surgeons and maternal fetal medicine specialists. Learn about your visit to our Center.

And when it comes to treatment and procedures, you will be treated by dedicated TTTS specialists, including fellowship-trained fetal surgeons who have trained specifically and extensively for these procedures. Our expertise in treating TTTS means the best chance at a positive outcome for you and your babies. Take a look at our most recent fetal surgery and TTTS outcomes.

But experience at the Colorado Fetal Care Center goes beyond the medicine – we have care coordinators, social workers and staff to ease the stress of a TTTS diagnosis.

We attend to you and your family's needs, emotional or otherwise, and provide a personalized approach to navigating the entire process, including scheduling. In addition, we can help coordinate the travel and stay for each patient while they’re here.

If you'd like to learn more about twin-twin transfusion, visit:

• The Twin-to-Twin Transfusion Syndrome Foundation is dedicated to compassionately and empathetically providing immediate and lifesaving educational, emotional and financial support to families, medical professional and other caregivers before, during and after a diagnosis of twin-twin transfusion syndrome.
• The U.S. Library of Medicine offers MedlinePlus, a service that presents high-quality, relevant health and wellness information in both English and Spanish.