TTTS or Twin-to-Twin Transfusion Syndrome is a disease of the placenta. It affects pregnancies with monochorionic (shared placenta) multiples when blood passes disproportionately from one baby to the other through connecting blood vessels within their shared placenta. One baby, the recipient twin, gets too much blood overloading his or her cardiovascular system, and may die from heart failure. The other baby, the donor twin or stuck twin, does not get enough blood and may die from severe anemia. Left untreated, mortality rates near 100%.
The cause of TTTS is attributed to unbalanced flow of blood through vascular channels that connect the circulatory systems of each twin via the common placenta. The shunting of blood through the vascular communications leads to a net flow of blood from one twin (the donor) to the other twin (the recipient). The donor twin develops oligohydramnios (low amniotic fluid) and poor fetal growth, while the recipient twin develops polyhydramnios (excess amniotic fluid), heart failure, and hydrops. If left untreated, the pregnancy may be lost due to lack of blood getting to the smaller twin, fluid overload and heart failure in the larger twin, and/or preterm (early) labor leading to miscarriage of the entire pregnancy. Courtesy of the Fetal Hope Foundation.
The timing of the separation of the egg is critical in a TTTS case. Obviously the less time between the separation, the higher chance of TTTS accruing.
The cause of TTTS is attributed to unbalanced flow of blood through vascular channels that connect the circulatory systems of each twin via the common placenta. The shunting of blood through the vascular communications leads to a net flow of blood from one twin (the donor, or smaller twin) to the other twin (the recipient, or larger twin). The donor twin develops oligohydraminos (low amniotic fluid) and poor fetal growth, while the recipient twin develops polyhydraminos (excess amniotic fluid), heart failure, and hydrops. If left untreated, the pregnancy may be lost due to lack of blood getting to the smaller twin, fluid overload and heart failure in the larger twin, or preterm (early) labor leading from the demise of one or both twins, or the preterm labor can begin if the mothers uterus has reached it maximum size and causes early labor ending the entire pregnancy. The mother does not effect if the pregnancy ends like this. She is just another victim of TTTS. She is just another passenger on this crazy ride.
It will help you to understand where certain important vessels and connections lie in your children’s bodies. This way when the doctors start stating how your TTTS case is advancing you will be able to understand the severity of the case. This will allow you to make the most informed decision for not only your children, but your future.
Please keep in mind that just because one twin is smaller in size. He or her being smaller will not automatically make him/her disabled. My boys differed by 40% at birth, but both had muscle tone. Both could hold your finger, both could move, and reacted to my voice. The only way for them to be disabled is if one or the other does not get enough oxygen and that would cause disabilities. Also keep the fact that the earlier a baby is born the higher chance of learning disabilities or other conditions could occur. Such as ADD, ADHD, Autism, ext. please speak with you doctor to weigh each medical option to find the right plan for a specific case.
There are two main types of TTTS. Chronic and acute TTTS. Chronic occurs in the end of the first trimester to the middle of the second trimester. Chronic TTTS has a higher chance for a devastating out come. Acute TTTS, Typically occurs from towards the end of the second trimester through the third trimester. If your case is Acute TTTS, the best solution is a immediate delivery. This solution is better because it ends any linkage in the babies, plus the babies would be at a viable gestational age.
The arteries and veins are the main focus to finding a cure. These simple and normal veins and arties are found in every placenta. The underlying problem of TTTS is the placement of them. The connections can be a direct link. Such as an artery to artery; an artery to a vein; veins to arties; and a complex connection, such as multiple arteries to a vein, act. Please keep in mind that Arties carry oxygenated blood cells, and veins carry used blood that is in the process of being re oxygenated. So the issue is when you have “used” blood from one twin, directly passing to the other baby. The other baby then gets fewer nutrients and develops on a smaller scale.
When I was first diagnosed with TTTS, the doctor explained what he found in my ultrasound that would help diagnose TTTS.
1) Monochorionicity or a Discrepancy in amniotic fluid between the amniotic sacs with polyhydraminos of one twin (largest vertical pocket greater than 8 cm) and oligohydraminos of the other (largest vertical pocket less than 2 cm)
2) Discrepancy in size of the umbilical cords
3) Cardiac dysfunction in the polyhydramniotic twin
4) Abnormal umbilical artery or ductus venosus Doppler velocimetry
5) Significant growth discordance (often greater then 20 percent)
They then explained another type of staging that depending of the severity would increase as the pregnancy prolonged.
Quintero Staging System for Twin-Twin Transfusion Syndrome / one to five:
1) Stage I: polyhydraminos in the recipient, severe oligohydraminos in donor but urine visible within the bladder in the donor
2) Stage II: polyhydraminos in the recipient, a stuck donor, urine not visible within the donor's bladder
3) Stage III: polyhydraminos and oligohydraminos as well as critically abnormal Doppler’s (at least one of absent or reverse end diastolic flow in the umbilical artery, reverse flow in the ductus venosus or pulsate umbilical venous flow) with or without urine visualized within the donor's bladder
4) Stage IV: presence of ascites or frank hydrops (fluid collection in two or more cavities) in either donor or recipient
5) Stage V: demise of either fetus.
This staging system is descriptive. The risk of fetal death and neurological issues increases with higher you go on the Quintero Stage.
Quite recently a new system was developed that looks at the case in a very detailed way. This gives parents the ability to better judge the situation they find themselves and their children in. At every ultrasound the doctors will be looking for specific criteria to judge the level of TTTS. Each specific characteristic will be given the appropriate value. Typical the higher the evaluation number is the worse the situation, but that isn’t always the case. Here is the chart so you can better familiarize yourself and to be ready to make decisions.
There are a few ways to treat TTTS. Depending on your case your doctor will help you choose what is best. My doctor became amazed with what I began to understand and learn during my own TTTS pregnancy. Even to this day, I can still remember the doctors informing me of treatment options and how they figure out the severity of TTTS in each patient.
In a conversation that I had with Dr. Julian De Lia, MD, I found out that the mother’s diet will also have a huge impact on the outcome to the pregnancy. That the mother should be having high protein shakes, and eating a high caloric diet during her pregnancy.
As for the different treatment options of TTTS, here you go. This will give you an idea of what the doctors will say once you see them. They will evaluate your case and make recommendations for your family. Please keep in mind that regardless of how you case is treated and the outcomes. You will have to make peace with what ever decision you make. Here is the break down:
Termination One of the first ways a family can choose to treat the pregnancy is to terminate the entire pregnancy. This is allowed, the stress of the so called doomed pregnancy can be just too much for the family to handle. Obviously both babies will not survive. The parents will be counseled by their physicians. By terminating the pregnancy, the parents will have the ability to start the grieving process and try to move on with their lives. Many move on to have another normal pregnancy.
The remaining treatment information I found on the Children’s Hospital of Boston’s website. I thought it would be better to have the explanation of the complex medical options explained by the doctors who deal with this every day.
Umbilical cord ligation (tying of the umbilical cord) is performed endoscopically (through a small puncture in the mother's abdomen) when one twin is severely compromised with impending death. If one twin dies the other is at high risk for neurological damage caused by a severe drop in blood pressure. The procedure should offset the drop in blood pressure and prevent other continued symptoms in the surviving twin.
Serial amniocentesis-amnioreductions is a procedure that is used periodically to relieve the recipient twin of the excess accumulation of amniotic fluid. For this procedure, a needle is used to enter the mother's uterus and the recipient twin's amniotic sac, which is drained of fluid.
Endoscopic laser surgery is a procedure in which a small puncture is made on the mother's abdomen and endoscope is inserted into the amniotic cavity. This allows the surgeon to look into the uterus and use a laser to vessel con or interrupt abnormal connections between the twins.
Amniotic Septostomy is a procedure in which a needle is inserted into the mother's abdomen, and the membrane between the two twins is punctured to allow equilibration of amniotic fluid between the two sacs, giving the smaller fetus more amniotic fluid.
From what I have found this was a very common way to treat TTTS. But Better results have been found with the laser surgery that this type of treatment is on it way out.
Each and every Twin-to-Twin Transfusion Syndrome pregnancy is unique. It never presents it’s self the same way twice. So all the doctors can do is after each TTTS pregnancy ends, for the specialist to dissect the joined placenta to learn new information. Unfortunately, everyone for whatever reason cannot send their placenta to the people who would be able to provide this service. So much information is lost every day. My own placenta, showed that it looked like a 36-week age, when it was only 24 weeks. It had other uncommon issues that unfortunately we will not fully know their cause or effect that they had until more cases are found that have them.
The emotional side to TTTS, hmm where do I start? Intense, fear, drama, astounded, Lectured to, Inferior, Over-protected, Scared, Terrified, Threatened, Under-protected, Unsafe, Robbed, Cheated, Uninformed,
Unsupported, Powerless, Pressured, Restricted, Bossed around, Controlled, Imprisoned, Inhibited and Forced. The list goes on. Each family needs to develop a support group. The Internet was a great place to discover people who could help me understand what was not only happening to my babies, but to my own health, and how it was affecting my family. Emotionally, this is a horrific disease, and as a personal note, I would recommend start seeing a councilor to help release any or all of the feelings that might increase a mothers or families stress.