Julie Meikle

On the morning of September 11, 2001, I found out that I was pregnant with twins. That afternoon, I watched as the Twin Towers collapsed in New York City. What had started as the happiest day of my life, quickly turned into the saddest. I am originally from New York and knew many people who died that day. I thought it had to be a bad omen for my twins. Everybody I said this to, told me that I was wrong – that two new lives would rise from the ashes of those two towers.

A week earlier, I had asked my GP to refer me to the Early Pregnancy Care Unit at University College Hospital (Elizabeth Garrett Anderson) in London because I had been experiencing cramping pains in my lower abdomen and was worried that there might be something wrong with my pregnancy. When the technician doing the ultrasound detected the twins, she said that this might explain the pains. 

Three weeks later, at my first antenatal appointment, the ultrasound technician noticed that the nuchal translucency (the amount of fluid found at the back of a baby’s neck) of “twin one” was outside the normal range for the gestation and within the context of the twins being monochorionic, diamniotic (meaning one placenta but two separate amniotic sacs within it). So as early as 11 +6 weeks, the doctors suspected that Twin to Twin Transfusion Syndrome (TTTS), Down’s Syndrome or congenital heart disease might be present.

Luckily, UCH has a special Twins Clinic, run by Dr Eric Jauniaux, and I was sent there the next day. He told me that the type of identical twins I was carrying, monochorionic, diamniotic, is the type in which TTTS can occur (affecting around 10% of identical twins). At this point, Dr Jauniaux could not tell whether or not the twins had active TTTS. He was able to eliminate Down’s Syndrome and heart disease by amniocentesis and ultrasound, respectively.

Being a journalist, I needed to find out more about TTTS and the alternatives for treatment. I went home and got straight onto the Internet. What I learned is that there are three types of identical twins: the first type, which has two placentas and two amniotic sacs, occurs when the egg splits between the first and fourth days; the monochorionic, diamniotic type splits between 4-8 days (and is the type in which TTTS occurs); and finally, the type that shares a single placenta and amniotic sac (and which can produce conjoined twins) occurs after 8 days. Little is known about the causes for the different timings, or in fact, why the egg splits at all – and identical twins do not even run in families.

In basic terms, TTTS is caused by the connections of the blood vessels in the placenta between the two babies, which causes blood to flow from the “donor twin” to the “recipient twin” – leaving one baby with too little blood and the other with too much. Both babies are producing their own blood, but the recipient twin is also receiving blood from the donor twin. This results in overloading the recipient baby’s cardiovascular system, while depleting the donor of blood and nutrients – which is why there is also often a marked difference in size between the two babies. 

I was surprised by how much information there was about TTTS online. One site I found was that of The International Institute for the Treatment of Twin to Twin Transfusion Syndrome in the US, run by Dr Julian De Lia who pioneered laser surgery for TTTS in the early 1990s. He listed his email address, so I emailed him some basic questions. He called me that afternoon – which surprised me as I was living in London and didn’t expect a doctor – who wasn’t even seeing me as a patient – to contact me so quickly. One suggestion he made was that I begin drinking protein drinks two to three times a day to help keep some of the fluids with the donor twin so he is not depleted of nutrients, which I did for the duration of my pregnancy. He also told me to spend as much time horizontal as possible – which I did for the last three months of the pregnancy. This wasn’t difficult, because the sheer weight of the extra fluid meant I could not sit or walk comfortably. Dr De Lia also put me in touch with the Twin to Twin Transfusion Foundation in the US, which couriered a book of information to me the next day. 

The most important thing to understand about TTTS is the treatment options. If left untreated, TTTS can have a mortality rate as high as 80-100%. While there are a number of treatments, there are two that seemed to me to stand out as the best alternatives. The first is called aggressive serial amnio drainage (whereby the recipient twin’s sac is drained of excess fluid by amniocentesis), while the other is laser surgery (in which the actual membrane between the two sacs is sealed, thus stopping the flow of blood between the two babies).

Both treatments seem to have similar success rates (between 45-65% for both twins surviving, depending on which research you read). The laser surgery has a higher (as much as 80%) success rate for at least one twin surviving; however, it is apparently the option with higher maternal risk. The risk with the amnio drainage is that if one twin does not survive, there is a greater risk of birth defects in the surviving twin, such as cerebral palsy, caused by blood flowing back to the surviving twin. Both treatments can lead to the loss of one or both babies.

On one of the TTTS websites, I found a list of doctors who specialise in TTTS around the world, and was glad to learn that Dr Jauniaux was among these.

I began attending Dr Jauniaux’s Twins Clinic at UCH every Tuesday, so he could monitor the fluid levels in the sacs. The TTTS Foundation told me that active TTTS is occurring when one twin has less than three centimeters of amniotic fluid (causing it to be “stuck” within the walls of its sac as if it were shrink wrapped) and more than eight centimeters in the other (which causes pressure on the baby’s organs to cope with the additional blood). Another factor to watch for is the size of the babies’ bladders. In the donor, it can disappear from view altogether, while appearing far too large on the recipient twin, as the twin with too much blood urinates more frequently, thus producing the additional amniotic fluid.

It was not until I was 19 +6 weeks that the TTTS suddenly progressed. I suspected that it had become active, as my abdomen began growing noticeably by the day (many people thought I was already at term) and I was extremely uncomfortable.

I knew that Dr Jauniaux was a proponent of serial amnio drainage – and since it is key to act immediately with some form of treatment as soon as the TTTS appears (the additional fluid can cause you to miscarry or for one of the twins’ organs to fail), I knew I had to make a decision within the hour. Because I felt that I had educated myself enough to make such a difficult decision, and understood the consequences, I decided to go with the amnio drainage (with the idea that if it did not work, that I could try the laser operation – although there is a limited timeframe in terms of gestation in which laser treatment – or in fact amnio drainage – are options). The doctor drained 1.1 litres of amnio fluid from the recipient twin and after a few days of discomfort, I started to feel much better.

The amnio treatment lasted for seven weeks before I again felt very large and extremely uncomfortable. I knew the TTTS was back. At 26 weeks I had a second amnio drainage in which 600 ml was drained. This time I experienced extreme pain immediately after the amnio and it took some strong pain killers for me to be able to get up and go home. But again, within a week I was feeling much better.

I continued going to the Twins Clinic every week for the entirety of my pregnancy, and as I approached 29 weeks, Dr Jauniaux suggested I get steroid injections in order to speed the growth of the babies’ lungs in preparation for early delivery. The TTTS was still present, so I was carrying much more fluid than a normal twin pregnancy, so he believed that I would deliver before 34 weeks. From my research and after speaking with the doctor, I decided to deliver by caesarean section, because TTTS can occur during vaginal delivery (for some women, TTTS can make its first appearance at this stage) and cause brain damage after the first twin is delivered.

He also said that at this stage (29 weeks), he would not do another amnio if the TTTS recurred, because it was now too risky to attempt another drainage. At 32 weeks, another seven weeks later, the TTTS reappeared. Unfortunately, my doctor was away that week and the doctor on duty wanted to perform another amnio drainage, but I refused, saying that Dr Jauniaux had said it was now too risky. I went home in extreme discomfort and hoped I would last until my doctor returned and could schedule the c-section.

Three days later, I went into spontaneous labour. When I arrived at the hospital, the doctors on duty thought that I was fully dilated and would have to deliver vaginally. I was very upset because I knew the risks of this to the babies. Thankfully, it turned out that I was just four centimeters and could proceed with the c-section.

My babies, Jamie and Jasper were successfully delivered, weighing in at 3.5 and 4.5 pounds, respectively. They went into the Intensive Care Unit at UCH for the first few days of their lives, and were shortly moved into the Special Care Unit where they remained until the day before their actual estimated due date.