Once TTTS is suspected, it is crucial that the mother is referred to a specialist fetal medicine consultant immediately. Most hospitals will be able to diagnose TTTS at ultrasound scan, but some are not aware of treatments available.
Treatments available are as follows:
Only a few years ago, treatment for TTTS was rare and at best experimental. Many infant fatalities were never diagnosed as TTTS and simply put down to miscarriage. Further to investigation in recent years throughout the world, however, several types of treatment for the condition are now available - all with very positive results.
A mother's choice of treatment will depend on many things including the exact condition of the twins and her proximity to a treatment centre. Do remember that treatment needs to be a "team effort", often including the GP, local hospital, treatment centre, as well as family and friends.
Delivery options will be recommended by the specialist in charge.
At twin-2-twin we cannot advise on any particular kind of treatment, that is for the patient to decide for themselves along with their specialist consultant. We can help, however, by providing the latest details on all treatments and where they are available in the UK and abroad.
We are fortunate in the UK to have resident several world-leading specialists on fetal conditions such as TTTS, and many hard-working and understanding consultants at Fetal Medicine Centres. Research into the condition is currently a high priority within the medical profession worldwide and is beginning to attract wider public interest.
This involves the draining of excess amniotic fluid from the sac of the recipient (larger) twin. The process usually takes about an hour, with a varying amount of fluid being removed - often up to 2.5 litres or more in order to return the level of amniotic fluid to normal. This has the immediate effect of giving more space to the smaller (stuck) twin, can stabilise the larger twin, greatly reduces maternal discomfort associated with carrying excess fluid, and can allow the pregnancy to continue more safely by reducing the risk of premature labour. Many specialists prefer an "aggressive amnioreduction" procedure, which simply means taking even more fluid.
More than one drain is often required, as is constant monitoring of the mother. Some hospitals prefer the mother to remain in hospital during the treatment, others will allow the mother home the day after treatment for bedrest.
Overall, the success rates for amnioreduction therapy are positive, with approximately 44% of pregnancies producing two live infants, and 66% producing one. Obviously figures will differ from country to country and between treatment centres. This procedure is performed at well over a dozen specialist centres in the UK, with much research having been performed by Professor Nicholas Fisk and colleagues at Queen Charlotte's & Chelsea Hospital in London.
This treatment is either undertaken in conjunction with amnioreduction, or is performed as a single procedure. It involves the creation of a small hole in the twins' intervening amniotic membranes with the amnioreduction needle. This technique was introduced by Dr. George Saade and associates in America.The hole allows the two amniotic sacs to equalise their fluid levels, and early research findings have been positive. Many centres in the UK now perform this treatment.
Pioneered in the USA by Dr. Julian De Lia and associates, and researched in the UK at The Harris Birthright Research Centre by Prof. Kypros Nicolaides, and recently at St. George's Medical Centre, London, by Dr. Yves Ville (now in Paris). Laser Treatment is the only one which attempts to rectify the source of the problem, ie) the co-joined vessels in the placenta.
During the procedure an endoscope is passed through the tummy into the sac of the recipient twin.The fetoscope and laser are then passed down the endoscope. Using ultrasound and direct video guidance, the laser is used to selectively coagulate or break the joined vessels, often reversing the effects of the syndrome. This is a one-treatment procedure followed by regular monitoring.
Laser treatment has also been shown to help if one twin has died in utero or has a very poor outlook. By sealing the vessels that connect the twins it can prevent a survivor from transfusing its blood to the dead twin.
Most human organs when approached surgically are very similar from one person to the next. The placenta, however, can vary greatly from the location in the uterus, to size, appearance and the number of cord insertions. Suitability for laser procedure can depend on some of these factors.
This treatment involves causing the deliberate demise of one fetus, in the hope of providing a better chance to the other. This is not as callous as it sounds, as sometimes in severe cases it is considered as the only option to prevent the loss of both twins.
One or two drugs have been tried to reduce the urine output of the recipient twin and therefore reduce polyhydramnios (excess amniotic fluid), but do not seem to have proved popular. Some of the latest research concerns the use of high frequency ultrasound therapy (similar to that used to treat kidney stones) on the placenta. More details on this as we have them.
Being treated for TTTS can be an emotional time and some parents know mentally they could not cope with the uncertain outcome and do opt for a termination.
Many parents do beat the tremendous odds stacked against them and their unborn babies and it sometimes takes them a while to appreciate just how fortunate they have been.
Because it has not been possible to adequately compare the different methods, research has been started both for septostomy (coordinated by Dr Kenneth Moise from Baylor), and for laser (coordinated within the Eurofetus research project by Dr Jan Deprest, Leuven, Belgium). A European-wide controlled randomised study of treatment, comparing amniodrainage against laser fetoscopy is about to begin.
More Information from The Florida Institute for Fetal Diagnosis & Therapy on TTTS