Advice for Mom

Advice for Mom

If you are pregnant with twins, and have been diagnosed with TTTS, we know you are going to need someone to talk to who has already gone through a TTTS pregnancy.

This website has been put together in an effort to give you every ounce of information about TTTS we could gather, so that you may be fully informed and possibly dictate the outcome of your pregnancy.

From the experience of many parents with many outcomes we have put some SOUND ADVICEtogether for you:

Find out as soon as possible what stage you are in and the different procedures, risks, complications and treatment.

Be cautious in accepting that you are in stage 1 and in no danger!

Make sure your OB knows what he/she is doing. Some mom's cannot go for surgery, cannot get access to a Fetal Specialist, and are at risk that their caregiver may not be fully aware of the outcomes, and treatment. Give your Dr or OB this web address so they may be fully informed of procedures, and treatment.

Ask as many questions as you can. If you have been through this website, you may even be able to inform your OB on some issues!

The earlier the diagnosis, the more severe the TTTS, as this is a progressive disease. Laser surgery can only be performed up to 25 / 26 weeks gestation if you qualify as a candidate. Those that show stage 1 with a visible bladder in the donor are not candidates but....

Stage 1 can move to stage 3 or 4 within a few days. If you are not carefully monitored you can lose your babies to TTTS.

Watch out that your babies are monitored as often as possible. I mean every week from 25 weeks or more gestation. The ultrasound will include an in-depth look at your babies and dopplers, which are a way to check how easily the blood flows through the placenta. See average growth of the fetus by gestation to get an indication of your Donor is doing.

Take care that your OB or DR does not give you a false sense of security by saying that everything is looking well at the Ultrasound.

Watch for sudden weight gain - this could indicate that the amniotic fluid levels are rising in your recipient twin. Weigh yourself every day and keep a check on sudden gains.

NUTRITIONAL IMPLICATIONS IN TWIN-TO-TWIN TRANSFUSION SYNDROME

Identical twins with shared (monochorionic) placentas develop twin-to-twin transfusion syndrome (TTTS) from movement of blood through vascular connections in the placenta. Everything else about TTTS seems to be considered poorly understood or enigmatic, or controversial such as which treatment option is best. TTTS investigators have had difficulty: a) showing significant differences in blood counts between the twins by fetal sampling or at birth; b) trying to demonstrate transfusions from one twin to the other by injecting substances Into the donor and sampling the recipient; or c) trying to link clinical outcome to placental findings at delivery. Clearly, there are factors that remain to be identified in the pathophysiological process of TTTS.

We recently published a study reporting nutritional abnormalities in women with TTTS pregnancies (Twin Research 2000;3:113-7). In almost 100% of our patients seen for placental laser surgery, we observed below normal blood counts (anemia) and blood proteins (hypoproteinemia). These findings in the mothers, who have typically been ignored in TTTS research and fetal therapy in general, may explain, in part, amnionic fluid production rates in the twins. In addition, these findings may explain why some women with twin or higher multiple pregnancy experience serious complications when treated for premature labor and the like.

Individuals with nutritional deficiencies have low levels of an important blood protein called albumin. Albumin has many functions in our blood streams, but it is mainly responsible for maintaining our colloid osmotic pressure (COP). This means keeping water in our blood streams, as water is strongly attracted to the albumin molecules. When low COP exists, water leaks into our tissues and we can develop swelling (edema) and abnormal weight gain.

As a consequence of transfusion between TTTS mates, the donor develops lower albumin than normal, and the recipient a higher level. The high COP in the recipient eventually leads to excess amniotic fluid (polyhydramnios), as this twin absorbs water from the mother through the placenta. Polyhydramnios is the most problematic finding in TTTS, and without treatment the main cause of pregnancy loss. If the protein levels go down in the face of nutritional abnormalities, the recipient twin, who may then have a level higher than the mother, absorbs greater amounts of water from the mother. The degree of polyhydramnios and classification of TTTS as mild or severe based on the volumes of amniotic fluid observed at ultrasound and/or removed by amniocentesis may, therefore depend on worsening (or improving) maternal nutritional factors.

Returning to potential problems in the mother, the swelling could be localized to her ankles, or she may gradually develop water in the lungs (pulmonary edema). There are many reports of such serious complications in mothers of twins when they are treated for pre-term labor or undergo fetal surgery, but no one has identified the specific reason for these. We believe the abnormal metabolic parameters seen in our study population, the low protein levels (low COP) in particular, may be partially to blame. At our institution, we administer intravenous fluids cautiously and monitor weight closely when treating complications of multiple pregnancy. The swaying from maternal water retention and polyhydramnios in tie recipient twin will both contribute to significant increases in weight, which renders maternal weight gain an inaccurate determinant of actual nutritional status. Ironically, significant weight gain by mid pregnancy is desirable, but our findings dictate that caution be use in interpreting maternal weight.

The nutritional deficiencies of women with TTTS IikeIy develop from the demands of carrying more than one fetus. a greater tendency for morning sickness and a larger uterus that normal for the gestational age factors which are beyond one's control. Is there something that can be done to potentially counteract the nutritional component of TTTS and serious maternal complications? The 'why' of supplemental nutritional therapy is outlined in table 1. For the last 9 years, we have advocated that TTTS mothers, empirically regardless of the severity of the findings, augment their three daily meals by drinking slowly, throughout tie day, 2 to 3 cans of Boost High Protein (or Carnation Instant Breakfast, NuBasics, etc.). These products are convenient to use, and provide additional protein, calories, minerals, and vitamins efficiently. The should be consumed until the birth of the twins.

Women with TTTS may now have a means to participate in their own treatment, and do something in behalf of their babies and themselves.

Julian E. De Lia. M.D., F.A.C.O.G.
Judy Zunk, M.S., R.D., C.D.
International Institute for the Treatment of Twin-to-Twin Transfusion Syndrome
St. Joseph's Hospital
Milwaukee, WI
USA

Watch for any unusual pain in your ribs, stomach and back. This again indicates too much amniotic fluid. So many mom's complain to their OB's and they shrug it off as "What do expect?, you're pregnant with twins!"

Keep your blood volume high by drinking plenty as this will provide more blood flow to the placenta.

Reclining, positioned on either your right or left side also increases blood flow to the babies. Soaking in a pool, or your bathtub if no pool is available, is relaxing as well as beneficial as the slight pressure of the water pushes extra fluid from your body into your blood vessels thus increasing blood flow to the placenta.

Bed-rest is also important, as you will be at risk for premature rupture of the membranes and early delivery. If before 26 weeks, there may not be much they can do for a premature baby, especially if they are sick from TTTS.

Your care provider may feel it is necessary to ultrasound your cervix to measure the length. This is done with an ultrasound transducer specially shaped to fit inside the vagina. This measurement may be repeated during your pregnancy if there are any concerns about preterm labor or an incompetent cervix. A cervix is considered incompetent when it shortens considerably without contractions. Cervical lengths of 30 mm to 40 mm are normal. If your cervix is less then 20 mm, it bears close watching, bedrest, possible placement of a stitch known as a cerclage, and/or hospitalization.

Maintaining a positive mental attitude is important. Try focusing on what you can do to help your babies.

When you reach 25 / 26 weeks gestation, ask your OB about taking steroids in the event you deliver prematurely - this will give your babies a better chance of survival.

Beyond 28 weeks in severe cases, it may be better to deliver as your babies should have a good chance of survival if born now. Try to keep the pregnancy as long as possible, but in the event of the syndrome turning for the worst, close monitoring would help to determine delivery of the twins at short notice.

Mostly those babies that have not had the option for laser treatment are at a much higher risk as they still have TTTS. The decision is tough to decide whether to continue to take the risk of an already very high risk pregnancy or to take your chances in NICU. If your OB seems in doubt or cannot give you a direct response in whether you should deliver or continue, ask if possible for daily non-stress testingon your babies until you both decide to deliver.

Those who have had a successful laser treatment can possibly continue their pregnancy up to 34 /36 weeks gestation.