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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. |
