TTTS: My Experience with and Information on Chronic TTTS
I found out I was carrying twins on the same day that my twins were diagnosed with chronic Twin-to-Twin Transfusion Syndrome, on October 8 2002, almost six years ago. The internet was not the bastion of information that it is now – or if it was, I was connected only by a very slow dial-up modem, so the information I received came from phone calls with Dr. Julian De Lia and Mary Slaman-Forsythe, founder of the TTTS Foundation. It was not a promising situation. What I learned was that TTTS is rare – even some Ob/Gyns do not know of its existence – and often fatal.
My twin boys, Rory and Tiger, were diagnosed with Stage One Chronic TTTS at 18 weeks gestation. To sum it up in one sentence, TTTS is a disease that occurs in monochorionic twins, in the placenta – specifically, in the blood vessels in the placenta – which are shared unequally, causing one twin to have too much blood and nutrients, and one twin not enough. The twin with not enough blood, amniotic fluid, and nutrients is called the “donor” because he donates his share to his twin; the other twin is called the “recipient” because he receives more than his share.
TTTS is often diagnosed by certain markers, according to the Fetal Care Center of Cincinnati.
2. 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)
3. Discrepancy in size of the umbilical cords
4. Cardiac dysfunction in the polyhydramniotic twin
5. Abnormal umbilical artery or ductus venosus Doppler velocimetry
6. Significant growth discordance (often > 20 percent)
Chronic TTTS has stages, which are described in more detail at the website http://health.ucsd.edu/specialties/fetalsurgery/ttts/stages.htm
• Stage I: A small amount of amniotic fluid (oligohydramnios) is found around the donor twin and a large amount of amniotic fluid (polyhydramnios) is found around the recipient twin. At this stage, we will usually recommend that the pregnancy is closely observed for further deteriorations.
• Stage II: In addition to the description above, the ultrasound is not able to identify the bladder in the donor twin. This would be an indication that laser photocoagulation may be helpful.
• Stage III: In addition to the characteristics of Stages I and II, there is abnormal blood flow in the umbilical cords of the twins. Laser photocoagulation is recommended in this situation.
• Stage IV: In addition to all of the above findings, the recipient twin has swelling under the skin and appears to be experiencing heart failure (fetal hydrops). Laser photocoagulation may be attempted, but the chance of survival in this stage is lower.
• Stage V: In addition to all of the above findings, one of the twins has died. Usually the donor twin is the twin to die first, but it can happen to either.
Mary Slaman-Forsyth, of the TTTS Foundation recommends that all mothers pregnant with monochorionic twins have an ultrasound and ask their doctors the following questions to determine a course of action:
1. Is the placenta monochorionic?
2. Do the cords have 3 vessels or two?
3. Are the cords fully attached to the placenta?
4. What is the biggest pocket of fluid for each baby?
5. Can you see the bladder of the donor baby?
6. Is the heart enlarged or thickened in the recipient baby?
7. Are the dopplers normal?
8. What is the measurement of your cervix, is it long and closed or thinning or dilated?
9. Does the recipient baby have hydrops?
10. What are the weights of the babies in grams?
These question help establish the stages of TTTS, and a plan of treatment can be started. I would say that nearly all mothers with a diagnosis of TTTS are put on immediate bedrest, whether in the hospital or at home.
Nutrition after a diagnosis of TTTS is extremely important. Dr. Julian De Lia, medical director of the International Institute for the Treatment of Twin-to-Twin Transfusion Syndrome, recommends three cans per day of Ensure or Boost High Protein drinks, in additional to a high-protein diet. He says:
“TTTS patients at mid-pregnancy have severe hypoproteinemia and anemia. These maternal metabolic parameters may influence fetal TTTS characteristics and explain maternal sensitivity to intravenous fluid in complicated multiple pregnancies in general. We believe our data are sufficient to support the use of nutritional supplements in the management of early (monochorionic twins with subtle growth and amniotic fluid differences) and severe TTTS regardless of specific invasive therapy used.”
I drank my three cans a day of Ensure High Protein, stayed on bedrest, had an ultrasound every week which measured, among other things: the pockets of fluid around each baby, the size of each baby, the dopplers, and my cervix. I was also advised by my doctor, Dr. Nugent at the University of Michigan healthcare system, to go to labor and delivery if I felt any change in my body: pain, a larger-than-average growth spurt (which can be a sign of too much fluid), or any cervical signs of impending labor. Dr. Nugent had seen many cases of TTTS, and this is also crucial: having confidence in your provider after a diagnosis of TTTS. If you are educating your doctor about TTTS, find someone else.
The question of when to deliver with TTTS twins does not have a specific answer. The only cure for TTTS is delivery, yet the benefits of delivery have to be weighed against the risks of premature babies, and the risks of induction or the risks that accompany a c-section. In my experience, at 33 weeks my donor baby, Rory, had a heart deceleration during an ultrasound. I was admitted to the hospital immediately and stayed on external fetal monitors for 24 hours. His heart never decelerated again during those 24 hours, and because the deceleration occurred during a moment when I was laying flat on my back I opted not to deliver that day. However, a week later, the ultrasound technician noted that Rory hadn’t grown in his body measurements for two straight weeks. At that point I was 34 weeks, and I agreed with my doctor that Rory would benefit from delivery. I was induced with Cervidil, kept on continuous external fetal monitors, and gave birth vaginally about eight hours after the Cervidil was inserted. While the TTTS Foundation recommends cesarean birth, the Fetal Hope Foundation supports vaginal birth when the mother is otherwise a good candidate.
As a mom at Naturally Parenting Twins, I am conflicted when presented with how to be “natural” with a diagnosis of Chronic TTTS. Medical interventions are rarely natural, no matter how they are described! However, I believe that natural parenting harbors on trusting oneself as a parent, and with regards to TTTS, trusting your body to tell you when something is wrong. The abundance of medically necessary interventions need not stop a natural mom from paying attention to her body and her babies inside. Pay attention in particular to any growth spurts, as they are often a sign of polyhydramos in the recipient. Pay attention to how your body feels after eating a very high protein meal, and washing it down with some Ensure or Boost. Pay attention to how your babies move during weekly ultrasounds.
“Birthing From Within” has excellent resources for planning a cesarean section as naturally as possible, if you are able to prepare. However, many moms with TTTS have emergency c-sections due to the onset of Acute TTTS, which is TTTS that occurs rapidly in the third trimester or during labor.
Having had TTTS is not a reason to compromise on your decisions about parenting, specifically about vaccination, circumcision, breastfeeding, or cloth-diapering. Once the babies are born, the TTTS diagnosis no longer exists. My TTTS survivors are intact and unvaccinated, and were breastfed and worn. Because many TTTS survivors are born prematurely, help from a lactation consultant who has specific experience with premature twins is a necessity. If your babies are in the NICU, ask for a meeting with the lactation consultant to talk about how to breastfeed or pump with preemies. Some NICUs allow cloth diapers. Also, I specifically remember wearing both my babies in a Maya Wrap when they were about a week old, and walking around the pediatric ward with them.
As your children get older they may need physical or occupational or speech therapy, either from prematurity or relating to a pregnancy with TTTS. Again, I do not believe that appropriate interventions and being a natural parent are mutually exclusive. I have read of a study that correlates ultrasound with speech delays, and most TTTS pregnancies have a lot of ultrasound.