What I originally wrote on our facebook page at Fruit Of The Womb TTTS Angels. Wednesday, May 22, 2013
I am hoping we save some lives with providing information about ttts to expectant mothers of multiple babies. To be able to save the lives of other babies to me would mean that the death or our twin girls will not be in vain, that their memory will not be in vain. And that would truly be a miracle.
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Today I'm going to be talking about TTTS (twin twin transfusion syndrome) again.
PLEASE feel free to share this with others, especially if you know someone who is currently having a multiple pregnancy.
Did you know that TTTS does not just effect twin pregnancies but is something that can happen in multiple pregnancies with babies of shared placentas.
Our identical twin girls were monochorionic , which meant our single egg split late during implantation. Our twins shared one placenta and had single separate sacs for each baby.
Not all multiples develop TTTS or have this type of pregnancy, there are different types that should be watched closely when carrying a multiple pregnancy.
As far as I'm personally concerned, if your multiple pregnancy falls into a particular category that could be at risk for developing TTTS later on (like a shared placenta), then you should address the potential problems now before it is too late! Please learn from what happened to our twin girls and don't let the doctors fool you, they know something could be wrong and don't want to worry you until it looks like it's gotten worse. In our case by the time we were finally told there could be a problem it was too late, within a week's time we lost our twins and were left with nothing but medical bills, broken dreams and shattered hearts.
From about.com, a question is asked, "Can Triplets and Other Higher Order Multiples Contract TTTS?" and the answer is YES! Any number in a multiple pregnancy can develop TTTS, unless your pregnancy is not with identical babies. This is also something that effects a small number of pregnancies, however as far as I'm concerned that number must be growing and it's not just because of the advance in fertility treatments. This type of condition occurs when the babies are monochorionic, monozygotic, in identical pregnancies, formed from a single egg that divides.
This is what about.com says about TTTS pregnancy risks with multiples, "Twin-to-Twin Transfusion Syndrome (TTTS) is a condition unique to monozygotic multiples that share a placenta. Blood vessels within the placenta become crossed, resulting in an unequal flow of blood betwen the babies. One baby essentially becomes a donor to the other, recipent baby. It's dangerous for both babies, but does not impact the mother's health. Recent technological advances give doctors the ability to correct the situation with a special surgical procedure using lasers."
Laser therapy is the newest type of surgery for multiples who develop TTTS. In this surgery the doctor will make a small incision, and the instruments they use are small enough it does not hurt you or your babies to perform the surgery while inside your body. The laser therapy is done over the time frame of just a matter of minutes once they find all the blood vessels that they need to laser apart, to a matter of hours. Also something to keep in mind when the doctor is performing the laser surgery, those micro blood vessels that the doctor can not see won't be able to be lasered apart. There is always risk that ever after surgery there is blood flow between the babies and the fatal diagnoses you were told about before preceding with surgery, could still happen.
If your doctor is not able to perform the surgery with the small incision then your doctor may need to perform a cesarean incision to be able to reach the blood vessels on the placenta, that is what had to be done in our case. A vertical incision was made, and the uterus pulled out from inside me to reach the placenta and laser apart the blood vessels. It takes a longer time to heal from this type of surgery and in my opinion it was not too bad of an experience and my scar is just a part of my body now.
So what causes TTTS in pregnancies? There is not a real easy answer. This is what aboutcom says, "The causes of TTTS (Twin-to-Twin Transfusion Syndrome) are not exactly known, but one thing is certain: there is nothing you, as parents, did to create this condition. TTTS is not hereditary or genetic. It is not created by environmental causes,nor by any action or behavior of the pregnant mother. TTTS is a random abnormality of the placenta, in which shared blood vessels in the placenta shunt blood unequally between the two babies."
So how is TTTS diagnosed? For our twins it was easy to tell there was a potential problem, from once they began growing more and more our little baby b was always a little larger than baby a, and finally it reached a point around 10-12 weeks to where I felt I could even see a little bit of difference in their ultrasound photos. It was at the specialty doctors office that we learned our girls not only had TTTS but were upgraded from Stage 1 to the 3rd and 4th stages of TTTS, if we didn't do anything it would be fatal for both our twins.
About.com says this, "Ultrasound technology can be used to detect the development of TTTS (Twin-to-Twin Transfusion Syndrome) in a twin pregnancy. First, the determination of the babies' genders can help doctors establish whether twins are possibly monozygotic. Only same-sex twins (two girls or two boys) are monozygotic, except in extremely rare cases of chromosomal defects. Then, a doctor or radiological technician will examine ultrasound images to determine the number of placentas. When there is a single, shared placenta, further ultrasound monitoring will be conducted. Evidence of the development of TTTS includes:
discrepancy between the sizes of the two babies (one significantly larger than the other), too much amniotic fluid (polyhydramnios)in one of the babies, or too little amniotic fluid (oligohydramnios) in one of the babies."
"The severity of TTTS is characterized into five stages. The terminology is referred to as Quintero Staging, named for Dr. Ruben Quintero who developed the process for classifying the condition. They are:
Stage 1: Small amount of fluid detected in the donor baby, while a large amount is detected in the recipient baby.
Stage 2: Along with the symptoms of Stage 1, the donor twin's baby is undetectable on ultrasound.
Stage 3: One or both babies will show evidence of poor blood flow, a sign of a failing circulatory system
Stage 4: Recipient twin exhibits swelling under the skin and appears to be experiencing heart failure from the stress of processing the excess blood.
Stage 5: One of the babies has expired. Generally the donor twin is the first to succumb, but both are at risk."
There are always warning signs to pay attention to and now looking back I had so many but the doctors just kind of shrugged it off, yes I was a little overweight but that doesn't mean my concerns should not go unrecognized or be disregarded. What I remember most is the doctors we saw saying that it wasn't something to be of concern as of yet, therefore we never got the information, we continued forward, not realizing that we should have done so much more. Even though there is not much you can do when your multiple pregnancy develops TTTS, because honestly that condition is nothing that you did, it was just the circumstances of the pregnancy. I know, that's not a lovely thing to hear is it? But it's the truth.
Here are some warning signs to watch for and if you have these during your multiple pregnancy, be sure to talk to your doctor immediately because you could be at risk for TTTS. About.com says, "Warning signs in the mother include: The sensation of a rapid growth of the womb, A uterus that measures large for dates, Abdominal pain or tightness, or uterine contractions, Sudden increases in body weight, Hand and leg swelling in early pregnancy"
As well as there being warning signs that you should watch out for in your pregnancy when you're carrying multiples, there are warning signs you should watch out for when it comes to your babies, things you can try to pay attention to during your ultrasounds.
About.com says this, "Warning signs in the twins appear on ultrasound scans and include: Evidence of a monochorionic or shared placenta, A single placenta, Same sex twins, and A thin, hard to see, dividing membrane"
Looking back at what we went through with our twins we had several red flags popping up all around us. Even though we were going to see a high risk doctor, our doctor was not a aware of everything having to do with TTTS risk factors and the original doctor we wanted to see was, once we saw that doctor it was too late. It all feels so wrong now looking back on everything that happened, like we were cheated somehow, the risks were there but we didn't do anything until it was too late.
Of course it did not help that our babies were conceived via fresh cycle IVF, my history with PCOS, and that my ovaries hyperstimulated after retrieval of my eggs. All of these things resulted in a positive pregnancy, yes a wonderful thing, but I hyperstimulated causing quick weight gain, not too much at first but still weight gain as I had a lot of fluid in and around each my ovaries, ovaries the size of large grapefruits. Also during the pregnancy early on my uterus was larger, always was larger and in fact I was told before we lost our twins that I was measuring with a uterus the size of a women who would be 35 weeks pregnant, I was only almost 18 weeks at the time. I had swelling too, became more noticeable around 14-16 weeks when my hands, face, feet and ankles began to swell.
Risk factors that should have been more of warning signs is that the dividing membrane between our twins was not always easy to see, obviously our twins shared a single placenta as well. So many things we should have realized were red flags, warning signs all around us, but we listened to our doctors who told us there was nothing yet to worry about. Oh how I should have just listened to what my gut was telling me, I knew something was wrong and could be very wrong, but these were our first after eight years trying to conceive, we didn't think we would ever have anything happen that would cause us to lose everything.
There are warning signs that also should be paid attention to when learning the evidence, type of TTTS stage that is happening, about.com says, "Evidence of TTTS: Polyhydramnios (excess amniotic fluid) in the sac of one twin, Oligohydramnios (decreased to no amniotic fluid) in the sac of the other twin, Size differences (discordance) in the twins, Hydrops fetalis (water in one baby’s body from heart failure)"
Most important is this that about.com says, "It is crucial for parents with a multiple gestation to determine their placental type early. With monochorionic twins, you should watch carefully for the warning signs listed above. Since TTTS is a high-risk problem that can happen quickly and at any time in pregnancy, frequent examinations and ultrasound scans are necessary to catch the problem early. Many physicians are unaware of the warning signs so your awareness is critical. THE FOUNDATION ADVOCATES WEEKLY ULTRASOUNDS WITH A PERINATOLOGIST FROM 16 WEEKS GESTATION THROUGH DELIVERY TO LOOK FOR PLACENTAL SHARE PROBLEMS AND TTTS."
If we only had learned more, read more, realized that our doctor wasn't noticing all the warning signs, maybe something could have been done to help save our twin girls.
Something to keep in mind that if you have to go through this lasering surgery because your multiples have TTTS, and it is a Catholic or religious hospital, they may not end the life of one to save the other if one baby is not doing well, or has even passed away already. Many hospitals will not perform another surgery to surgically take the baby who has passed away to save the other.
In our case with our twins we would have had to of gone to a different hospital to have our twins completely separated after our first baby died. Because we were in a Catholic hospital they could perform the laser surgery, but would not do anything else. I suppose anything after that the hospital will, "leave it up to God" or "it's in God's hands". Ok, having faith is one thing but when it's the lives of multiples who's lives are in jeopardy and doing something like removing a baby who has passed away so the connecting blood vessels that are microscopic don't cause the other baby to die as well,.. I believe in those circumstances something can be done! After all, if the hospital is all so pro-life, shouldn't they want to save the life of the living? It all seems so backwards.
I do want to share the much of the information may have been from several searches online to be able to provide medical definitions, and from aboutcom, but information like this can also be found from the official ttts website at tttsfoundationorg
How can you prevent TTTS? From the official tttsfoundation website they answer that with this, "The early pregnancy events responsible for TTTS are in place before the mother knows she is pregnant, i.e., there is no primary prevention for TTTS. It is not caused by hereditary, genetics or by anything the parents did or did not do, nor caused by anything the babies are doing because they are innocent bystanders to events in their placenta."
That of course is standard information, however this is what interests me. Still from the official tttsfoundation website, "Recently, some investigators in Pittsburgh have taken research done by Dr. De Lia (in Milwaukee) on maternal malnutrition and its treatment in TTTS one step further. They started all mothers of monochorionic twins on aggressive nutritional therapy in early pregnancy, and found fewer and less severe cases of TTTS, when compared to a control group."
I've also read about bed rest earlier on in pregnancies that are at risk for ttts. So my advice to you if you have any of these symptoms, signs or risk factors for your multiples with developing ttts is : talk to your nutritionist who is in the doctors office for advice on what you should be taking and eating to help make sure you are getting all the nutrients your body and babies need; and the other part of advice that I have for you is to be on limited or light activity, if you are more high risk then I would even recommend complete bed rest.
Bed rest in pregnancy also depends on your health, the state of the pregnancy and how everything is going. I was put on bed rest several times during our pregnancy with our twins and then would be told by another doctor we would see that I didn't need to be on bed rest. Very frustrating to be told be one to do one thing, and by another to not do it.
If at any time in your pregnancy you are feeling uncomfortable with the doctor you are seeing or feel you should get a second or even third opinion, I recommend you just do it. The worst thing you can do is do nothing when you are worried there could be a risk, and you don't listen to your instincts and just stick with what you're doing and who you're seeing for your pregnancy; after all, not all doctors know what to look for and sometimes it's better to go somewhere else in these cases and types of pregnancies.
I know this was quite lengthy today but I hope that the information provided will be of help to someone out there who has either experienced loss, and especially helpful to someone who is currently pregnant or just wants to be informed about what could happen in a multiple pregnancy. What I've learned is that there is never too much information that you can learn about your pregnancy. I would rather be too informed than not informed enough.
Ultimately this is about what makes you most comfortable, you should do what is best for you and those multiple babies.
If I can help save the lives by sharing our twins story, and getting the information about ttts out there to expectant mothers, then the deaths of our daughters will not be in vain, their memory will not be in vain.
To save the lives of many. That truly would be a miracle.
I wish you all a gentle and peaceful day. Much love to all!
