Should be answered to the parents at least weekly at each ultrasound
1. Is the cervix long and closed, or is it thinning or dilated?
The cervix has a measurement of when it is long and closed. Let your patient know what number is normal and at what number a cerclage might be needed to help give the cervix support. Knowing the relevance of the measurement, parents can understand what they would be looking for at each appointment and why they can feel positive if the length of the cervix is not changing. Often we find that looking at the cervix frequently is often not done. Many pregnancies could have been saved by simply doing this test at each appointment. Because of the nature of TTTS, specifically polyhydramnios, in addition to a multiple pregnancy, the cervix is at risk to weaken. Laser surgery can still be done after a cerclage, but not after a premature birth and loss of the babies from a cervix that weakened without notice.
2. What is the fundal height?
The fundal height is one way to measure how much fluid is too much in the sac of the recipient twin. Instead of saying 'too much' or 'too little' fluid when talking about the sacs, give the parents the fundal height. If it gets over 30cm, this is part of the criteria for laser surgery with Dr. Julian De Lia. Knowing this number will help the parents understand what number they are looking for to need laser surgery or amniocenteses.
3. What is the biggest pocket of fluid around each baby?
This is another form of measuring the fluid in each baby's sac. The normal range being between 3-8cm. Parents will make sense of the fluid problem by watching what the numbers are doing and how much they get out of the normal range. Again, it is about helping them know when they might need to start a treatment and why. These measurements will make sense to them and will give them the tools to make decisions.
4. Is the Doppler normal for each baby?
Explain to the parents that the doppler can be normal, absent diastolic flow or reverse flow and what each means. If the donor baby has absent diastolic flow, laser surgery may help. We have seen babies go weeks and weeks with this problem and survive, but they are very tired and in need of a lot of help in the NICU. It would be better for the baby to get treatment to help the flow go back to normal. Reverse flow is more dangerous and the parents need to know that urgent decision making needs to take place. Doppler test can and should be done prior to 20 weeks and at each ultrasound.
5. Is the recipient's heart thickening?
This is another sign that laser surgery may be needed. Parents may also benefit greatly from nutritional therapy as researched by Dr. Julian De Lia (journal article in bedrest section). All parents are encouraged to start drinking Boost 3 times a day along with bedrest, per Dr. De Lia. At the Foundation, we are astounded by the number of mothers who say, "That is me!" when we talk about how in the research of nutrition and TTTS, most mothers are malnourished where they are drinking a lot of fluids but not urinating very much. This happens to mothers who have been nauseous as well as mothers who have been completely healthy in their pregnancies. Many mothers who seemed to need laser at their diagnosis responded to nutritional therapy and bedrest and did not need any treatment at all. This is something to recommend to all your patients because it makes them feel 'in control' and that they are contributing immediately to helping to save their babies which we in fact, believe that they are. Of course, parents understand that they may need more than just this therapy.
6. Can you see the bladder of the donor baby?
Let the parents understand that the bladder is there, but can we visualize it. When the baby does not get enough blood flow, it may not be urinating enough to see the bladder. The parents understand that if you tell them that the biggest pocket of fluid for the donor is 2cm and you can see the bladder, that is much better than not being able to even get a 1cm or see a bladder.
7. What are the weights of the babies?
We tell the parents that anything over 20%, the doctors start to ask why. Babies are never going to be the same size but over 20% is unusual and has a reason to it. The answer lies in what the placental share is and the number and direction of flow of the connections that make the syndrome. We explain this over the phone to the parents how both are important. We tell them to know the weights of the babies, subtract them and divide by the bigger number. This is the percentage size difference.You cannot tell for sure what the placental share is until after birth.
8. Does the recipient twin have hydrops?
Let the parents know that hydrops is a sign of beginning heart failure. We have seen babies live and be healthy with hydrops but only with laser surgery. Amniocentesis is not going to go to the source of the problem or do it fast enough to help this turn around. Knowing what defines hydrops is helpful to parents, because they will be relieved each visit when their baby does not have it. If at one appointment hydrops is seen, the parents will know what to do. They would have already have made that decision in their backup plan that they created when they were diagnosed.
9. Is the smaller baby growing at the same rate of growth?
It is important for parents to understand placental share. If a baby has a small placental share, at some gestational week the baby will start to 'run out' of his share of the placenta. This is a gradual process, but what it means is that the baby wants to get bigger in size, but it is not getting enough blood to do so. When the donor baby stops growing, this is the time to deliver. If you try to 'buy more time' the baby will only be deprived of oxygen and could end up with varying degrees of cerebral palsy. Watching the rate of growth is another reason for frequent ultrasounds. Parents who have not had polyhydramnios but a large size difference in the babies have benefited by going into the hospital at 24 weeks for 24 hour monitoring of the donor baby. Usually the parents deliver around 28-29 weeks when they see one or both babies going into distress. At some point, the babies may be better off in the care of the miracle workers of the NICU than continuing in the environment of a shared monochorionic placenta.