What is Twin-to-Twin Transfusion Syndrome (TTTS)?
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Christine Stewart-Fitzgerald:Statistically speaking twin to twin transfusion syndrome is not a concern for the majority of twins but it can be a serious complication for many twin pregnancies in which the baby share the placenta and it can result in severe health problems and in even death for one or both of the unborn twins. Today we are here with Mary Slaman of the Twin to Twin Transfusion Syndrome Foundation to raise awareness of this problem and help expecting twin parents to better understand what option they may have to combat it. This is Twin Talks.
Welcome to Twin Talks. Twin Talks is your online on-the-go support group for expecting and new parents of twins. I am your host Christine Stewart Fitzgerald. Do you want to know all about the episodes we have realized so far? Visit the episode guide on our website at www.newmommymedia.com. It’s also where you can subscribe to our newsletter to learn about our latest episodes and if you would like to listen to episodes on the go then subscribe to twin talks on iTunes or download our free apps. Here is Sunny with details on how you can get involved with twin talks.
SUNNY GAULT: All right, so we have different segments that our listeners can participate in and this is a great way to became involved especially if you are not ready to join us on the show on one of our topics and just kind of want to get your feet wet this is a great way to do. First, we have a segment where you can ask all of the experts that we have listed on our website we call them our featured expert or ask the experts. This is a great tool that you can use to ask them questions. So anything that relates to pregnancy we have got perinatologists that are on there, pediatricians, lactation consultants anything that would really impact your twins for the first five years of life. Our experts are trained to know more information about so if you have questions that if it is not immediately obviously if you need to seek immediate medical attention you need to do that on your own but if it is something that other parents could really benefit from, a question or general question you have we would love to explore that. You could definitely submit your questions to us and you can do that through the website.
Also we have a fun segment; in fact, we are going to do it later on the show. It is called “Twin Oops” and it is where twin parents share funny stories that have happened between them and their twins and just raising twin parents or perhaps it was something that happened during your twin pregnancy and so we would love to share those funny stories. Those are just a couple of the segments we have on the show. We would love you to participate in any of the segments we have on our show and you can find more about that on our website at www.newmommymedia.com Just go to the show section and go down to twin talks and you can find out more information there, so yeah that's a couple of ways you can get involved.
CHRISTINE STEWART-FITZGERALD: Well let’s meet our parents and our expert today who are joining in the conversation about twin to twin transfusion syndrome. Tell us a little bit about yourself and your family and what your connection is with this disorder and I am going to start out with Mary as President of the Foundation I know this is a very personal connection for you so can you tell me about that?
MARY SLAMAN: Yes I was diagnosed with twin to twin transfusion syndrome in 1989. At that time there was no internet, there was really no way to reach out and connect with anyone to get extra help and I delivered my twins, Mathew and Steven. My son Steven sadly passed away and his brother Mathew survived and has helped me throughout his full life with the foundation and it really has been my life’s conviction and my life’s work.
CHRISTINE STEWART-FITZGERALD: Wow I can hear the emotion in your voice so I really appreciate that you are here with us.Let me jump over to Brooke.
BROOKE: Hi my name is Brooke and I am a first-time parent and I got pregnant with twins so that was very emotional. As soon as we got into about seventeen weeks we started having complications with our pregnancy and got diagnosed with twin to twin transfusion syndrome along with Vasa Praevia. It was a whole roller coaster but the girls are here now. They just turned six months, Faith and Sophia and Faith was my baby A who was the smaller one and she is still a little bit smaller than her sister but they are all healthy and growing. We got diagnosed just at stage one so we did go up to the Hollywood Presbyterian hospital to see Dr. Smidge for a consult for surgery but it never progressed to stage two where the bladders aren’t emptying. So it was kind of a week-by-week case but I did have to be on a five months of bed rest with a month-long hospital stay at the very end so there was alot involved that. That’s pretty much everything on that shelf.
CHRISTINE STEWART-FITZGERALD: It's great to hear the positive outcome and you know it's not always positive so that’s why we are trying to have different perspectives on this episode. So I wanted to introduce Kristine maybe you could give us a snapshot of your experience.
KRISTINE: Hi my name is Kristine Ivino and I am connected to TTTS because I lost my twin boys in 2013. I have a beautiful daughter she is four so she was my first child. I also have a twenty-month-old son and I am thirty-three weeks pregnant right know. So I lost my boy's Robert and Christopher in 2013. There are a lot of details to my story, I was twenty-four weeks pregnant, I had the laser surgery, well I was really twenty-two and a half weeks pregnant and I lost them after the surgery. My number one concern about and challenge with TTTS is that there is not enough awareness and I am so thankful you are doing this podcast. It really makes me happy. My OB and high-risk doctors did not properly care for me. I know this wasn't the there intention but for whatever reason it has they delayed my treatment because they were not really following the protocol for twin to twins. When you have identical twins there is a protocol to follow really. Unfortunately but fortunately I met Mary who has been an amazing inspiration to me. I met her just really we got connected in the whole midst of going into labor early and having emergency laser surgery. So she was more of my connection after I lost the twins but you know I do feel like my story is hopeful. It’s sad but it is hopeful because through Mary with the help of her and the foundation my husband and I have been advocates to spread the awareness for TTTS and that has really helped my healing. You know I am just so thankful for opportunities like this where we can spread awareness and it just helps me honor Robert and Christopher.
CHRISTINE STEWART-FITZGERALD: That is great and I love that you were able to use your pain to something very positive and I am just going to jump over to Kristine.
KRISTINE: Yes goodness, I have a long story too but I will condense it as good as I can. I got pregnant with the twins which were a complete surprise, I do have three other children but this was my first set of twins and I really did not know anything about twins at all prior to this pregnancy but they had kind of given us a heads up about what they would be looking for in ultrasounds and they had mentioned the TTTS and they said do not Google it and don’t worry about it, we will be watching for it. Anyways we came to find out about it in eighteen weeks when I started having fluid discrepancies and we went to Charlotte to speak with Dr. Stevenson and they did an evaluation but I was not quite, I didn’t have TTTS yet. She said I might end up with it but I didn’t qualify quite yet for which was great news and then a week later I went in for my ultrasound and I had progressed very quickly. It was just absolutely crazy how quick it progressed. So I guess week nineteen I was at stage three at my doctor’s office in Ashfield and they actually got me into Cincinnati for surgery. Within a couple of days, I guess we came home and we left within a day to go out there and the following day had all the scans they do and everything.
Then I had my surgery and I had really odd intermittent changes so I went from a stage three back down to a stage two it was very odd but anyway we were given a very poor prognosis for my donor twin. It was really sad and thank goodness I had Mary because actually, the first website that I came across when I did Google it against the doctor’s advice was Mary's and I was so glad to find the twin to twin transfusion syndrome foundation because it was you know reliable information and it wasn't all fear-based. It was really such positive experience I don’t know what I would have done without her honestly. They supported us through our entire surgery, she did, the foundation did just in so many ways, and they were there for me all around the clock.
CHRISTINE STEWART-FITZGERALD: You know what and I have to say, Kristine, I think that’s so great to hear that kind of support you got was not fear based and so I know this can be a super scary thing and again it's great to know that there a variety of outcomes and we don't need to be afraid of those outcomes and just focus on what we can do. That's important to keep in mind. One more parent Cassidy thanks for your patience could you give us a little snapshot of your experience.
CASSIDY: So yes my experience is a little bit unique and it has a happy ending. I have twenty-month-old girls, Aden and Hardly and I’m a weird person who did not know that I was having twins. This is sort of a crazy story, but the short version is my husband and I planned a home birth and my pregnancy was fantastic. It went perfectly all my measurements everywhere along the road were perfect and when it came time to do ultrasound we decided against it because everything had been so normal and we thought there would have been indications somewhere if something was really not normal so we thought an ultrasound is anything we learnt from isn’t going to change what we do so it turns out there would have been a really good reason to check and we were having two.
So my twins were born at home at thirty-seven weeks and when our baby A came out first she was only four pounds and that was the first clue that I wasn't done yet, so baby B turned out to be over seven pounds which were the baby we were feeling the whole time and sort of after the fact we learnt that most likely they had been in a TTTS situation. We didn't know about it and everything turned out totally fine and all my Googling after the fact was mainly really grateful that things turned out as well us they did because now I know everythingthat could have happened and had we known we absolutely would have gone through everything and done whatever the doctor told us to do but we didn't and so it's a don’t try this at home situation
CHRISTINE STEWART-FITZGERALD: We are glad that you did have a positive outcome because obviously, things could have been different. Thank you
SUNNY GAULT: All right so before we dive into our conversation today I found this headline and usually a headline focus more on twin babies or perhaps twin pregnancy and this I thought was a good reminder of just how twins can help each other throughout life. This was a headline that I found these twins are grown and they are fraternal boy twin’s men, they are men now, they are actually in the military. I couldn’t found out where they were its really interesting they didn't list their ages that I’m aware of in this article which I thought was kind of strange but anyway they actually have reverse initials, so one if R.J and the other is J.R. Rivera is their name and this out of Virginia beach military town if you guys are familiar. So the article is about how one of the twins J.R donated one of his kidneys to R.J because R.J was found to have he was diagnosed with IGA nephropathy which is basically something that affects your kidney and he would be on dialysis if he didna have a kidney transplant. So this was just about his fraternal brother donating the kidney and every turned out okay and the procedure went fine and now there wasn't much of you know there was no really waiting there wasn't anything that the twin brother had to wait for any period of time course his twin said he was going to do it.
He did end up doing it and the doctor said that for fraternal twins which is a little bit different from what we are talking about today but that it was kind of like the chance of it matching and you know everything turning out okay was the same as it would be for regular siblings and so it was a good match. Everything turned out okay and I know this not always the case but I kind of like to show this kind of article and kind of be an uplifting source of information for us to know that even when the parents are out of the picture because the article doesn't talk too much about the parents. This was a decision that the twins made for each other and to know that even way past birthing our baby’s and you know those toddler years and getting them into school and all of that the twins can still have an enormous impact on one another medically speaking. I thought it was a nice article to kind of share, we will go and post a link to our Facebook page if you guys want to check it out.
CHRISTINE STEWART-FITZGERALD: Today we are here to talk about a medical condition called Twin to Twin Transfusion Syndrome and joining us is Mary Slaman of TTTS Foundation, which is an abbreviation and we also have a group of parents who have experienced this condition. Mary can you help us understand a little bit more about this condition in general like what type of twin pregnancies are affected by this.
MARY SLAMAN: Twin to Twin Transfusion Syndrome or TTTS is a random disease of a monochorionic placenta, so it is one placenta shared by two or more babies which could be twins or babies in a higher-order pregnancy such as triplets, quads or more. It can and has been reported in dichorionic, diamniotic pregnancies but it is extremely rare and that is where the two placentas would be fused. When that happens it is really crucial for the placentas to be analyzed after birth with a pathologist and pictures taken so it can be formally written up and recorded.
CHRISTINE STEWART-FITZGERALD: We know it is only identicals because identicals have or possibly sharing a placenta, we know that fraternal don't share a placenta but I think you are also saying that there are some cases of fraternal twins who have fused placentas that could have this as well although more rare. The main focus is the monochorionic twins.
MARY SLAMAN: Monochorionic one placenta and two amniotic sacks. Monochorionic-diamniotic.
CHRISTINE STEWART-FITZGERALD: Okay, good to know. Can you describe in a layman's terms what exactly is TTTS, what's the condition itself?
MARY SLAMAN: Well you go back to after conception when the embryo splits between four and eight days after you conceive, the umbilical cords would randomly attach to the one placenta that they are going to be sharing. The cords are basically claiming their space and the blood vessels form in such a way that it’s pre-determined that at some point in the pregnancy the syndrome is going to be triggered.
So the way I describe it to parents in very layman terms is that I have them visualize a capital letter H, the two outlines of the H represent independent blood vessels that go from the placenta to one baby's umbilical cord just to that baby alone to nourish that baby and then there are blood vessels from the placenta that go to the second baby's umbilical cord just to that baby alone. That is what is called placental share, how much placenta nourishes each baby separately. This is not TTTS but it’s a very important part of a monochronic pregnancy that parents need to understand because often you will have one baby that is larger than the other and many parents think that that is a TTTS or they are going to get it for that reason which is not necessarily true. What it could mean is that you may deliver sooner than expected because of the smaller baby runs out of its share of the placenta.
CHRISTINE STEWART-FITZGERALD: Is this something that it just happens overnight or does it gradually develop over time and so is it worsens? When would expectant moms first discover this?
MARY SLAMAN: It’s crucial for a pregnant mother to get an ultrasound as early as possible to find out if she is pregnant with twins. As early as eight weeks but definitely within the first twelve weeks, because they can a hundred percent see that thin divide in the membrane within the first three months. If they find out they are pregnant with twins they immediately need to ask is there one placenta or two. If there is one placenta they need to get into the care of a high-risk maternal-fetal medicine or primatologist doctor. By sixteen weeks of pregnancy, they need weekly ultrasounds with that doctor until birth. Often the first symptom that they are going to feel is too much amniotic fluid that is going to cause a lot of pain shortness of breath.
CHRISTINE STEWART-FITZGERALD: Too much amniotic fluid in, so this is being measured when they go to a maternal-fetal medicine specialist and I can remember all these tests, they were looking at blood flow and measuring the volumes of the amniotic fluids so this is just part of a regular screening process that is done at the MFM's office?
MARY SLAMAN: It’s all based on ultrasound, so if you go back to that visualized in the capital letter H example, the outer two lines of the H are the placental share, how the babies get their blood separately but with Twin to Twin Transfusion Syndrome syndrome we focus on the middle line of the capital H. Those are blood vessels that are shared between the babies. There is blood circulating between the two babies through theshared vessels. They cross the placenta left to right, right to left, these are the vessels that cause the Twin to Twin Transfusion
Syndrome, these are the vessels that they shoot a laser on to seal shut when they do laser surgery.
All monochronic placentas will have shared blood vessels; however, the majority of the time, about eighty percent of the time, the babies is circulating blood back and forth in a very balanced way with no ill effect to the babies. About twenty percent of the time could be higher, the placenta sends more blood to one baby who is called the recipient twin who then urinates more which is amniotic fluid, so the mother will be possible gaining weight quickly possible within a day or two, people might say gosh you look like you are ready to deliver, her clothes don't fit when they did the night before, the placenta then sends less than normal amounts of blood to the other twin called the donor baby who will urinate little to none, so there will be little to no amniotic fluid. The blood flow between the babies to the shared vessels in this example is not balanced and that is how this syndrome begins.
CHRISTINE STEWART-FITZGERALD: So, It begins with an imbalance of the blood flow and does it progress into something worse? I think I have heard from our guests that they are talking about different stages, what are these stages?
MARY SLAMAN: Well we do have a list of fifteen questions on our website that we can link to the public and when asking those questions which are the same questions a laser center is going to want to know the answers to. The first question involves the amniotic fluids, when you look at the ultrasound you see your baby there is a blackness around the baby, that is the amniotic fluid and they measure the biggest width of black. So, it's 2 cm to 8 cm is the normal width of black or amniotic fluid the deepest pocket.
Stage one is when you have one baby’s amniotic fluid goes above 8cm and the other babies go below 2cm. Stage two is when you don't visualize the bladder of the smaller donor baby any longer, it is still there but it is not urinating enough to show and you need to look at the ultrasound for at least 30 minutes to see a baby urinate. Stage three is when they do the Doppler’s, the bold flow to the umbilical cords and they also can do the blood flows through into the brain. If those Doppler’s are not normal in any way that becomes stage three, and then stage four is called when you see high drops in the recipient baby who gets too much blood flow and has too much amniotic fluid there is no more room for this amniotic fluid or urine to go and it starts to absorb this into the baby's body, so you will see edema, it is absolutely terrifying to see this on ultrasound and if you are in the care of a doctor who is very misinformed they may think that the pregnancy is over, that there is no hope for the baby which is not true. Stage five unfortunately very sadly is the loss of one or both of the twins.
CHRISTINE STEWART-FITZGERALD: Wow, so from a health sampling of the babies it sounds like an edema is one of them because I'm sure there are some other effects that can happen to have that or just not being able to circulate that extra fluid in the body. What are some other health concerns for the babies?
MARY SLAMAN: It depends on what stage that you are in. Stage one again it can be very mild, you may go to stage two or you may get better. Nobody ever thinks about getting better but it can. Basically both babies are at risk, its life threatening, they are both at risk for heart failure but for opposite reasons. So the baby getting too much blood flow the recipient twin is pumping a lot of extra blood flow and the heart is a muscle it can get very tired over time and that baby can pass away just from overloading the cardiovascular system. The other baby is opposite and can pass away just from extreme anemia not getting enough.
CHRISTINE STEWART-FITZGERALD: We recorded another episode and I think we are familiar with twin polycythemia anemia and I know that is where the twins are not getting the correct amount of blood flow and that is anemia, is that what you are talking about?
MARY SLAMAN: It’s not necessarily the same thing but it's similar, that's TAPS where usually it’s often referred to as acute TTTS. It comes on very suddenly towards the end of a pregnancy, you have one baby that is born very purple, one baby that is very white. It can happen when you do laser surgery and they do not laser all the connecting blood vessels and maybe it was very small they could not see it and they can develop symptoms again. It is a form of TTTS but with TAPS usually you don't have the fluid in balance. Stage three is when the dopers are not normal, they should do a doppler on the umbilical cord but also the middle cerebral artery of the brain. There can be a very different in the number of the brain as far as detecting anemia, one baby can have too many red blood cells than the other. If they can do that ahead of time sometimes they can have some insight that the syndrome is coming, or just the TAPS is coming and they have to watch it more closely to possibly deliver sooner.
CHRISTINE STEWART-FITZGERALD: It’s great to know that we have the technology available that allows for better monitoring, and so I'm thankful for that certainly. How can expecting twin moms know if they might be at risk? So let's say they find out they are pregnant with twins and their doctor says yes it looks like they are identical and they believe they are monochorionic, what do they need to know if they are at a higher risk?
MARY SLAMAN: The most important moment is the OB transferring their care to the high-risk doctor which historically is the number one crisis that I have seen over the last twenty-five years. Many OB’s who are wonderful but there are probably more that are just misinformed and they want to keep the mom who has multiples possibly as a status symbol or they just feel yes I have done this before I can do this again and they don’t forward the mom on and you need to forward the mom on immediately. It can’t be at eighteen weeks or at twenty weeks it should be at within the first trimester. So if a mom is not gettingforwarded on they may even not even know what an MFM doctor is.
That is the important part is to get to the important part is to get them the care.
CHRISTINE STEWART-FITZGERALD: If they were eighteen weeks and they are not getting referred to an MFM then that’s very serious signs so anyone listening if you are carrying identicals you should be seeing an MFM right?
MARY SLAMAN: Well you have to understand that laser surgery can be done as early as sixteen weeks of pregnancy. If you have the syndrome at sixteen weeks let’s say you had too much amniotic fluid you just thought it was waking you had shortness of breath you call your OB. I think one of the guest today went through this through herself is that most OB’s you don’t usually get to the doctor but maybe a nurse who says that is just typical for twins you have never been pregnant before this is what you are going to feel, we’ll see you at the next appointment.
The mom is trying so hard she knows something is not right but everyone is going to want to feel better if someone says everything is fine but it is really not fine. What happens is a lot of times the syndrome has progressed much worse when they go to their appointment than if they could have just be seen sooner. At eighteen weeks you could lose both your baby’s if you got in sooner you could have had the surgery and they would have been already better.
CHRISTINE STEWART-FITZGERALD: We are talking about the different types of diagnosis and the process behind that and you mentioned treatment as well, like laser surgery particularly is that the main treatment option available to the moms? It sounds like it is pretty new has it been around very recently?
MARY SLAMAN: The laser surgery was actually first performed twenty-seven years ago. When I was pregnant if my doctors had told me about the surgery I would have been the second mom in the world to get it. I had very negligent care myself and one of the best things that happened in this course are the invention of the internet which is around 1995.Once the internet came to be parents were able to find the foundation, they learned about the laser surgery and many got very angry and they went back to their doctors.Why didn't you tell me about this? I would like to learn more about it and that is what happened.
In the medical community, it becomes much more acceptable and more laser centers came to be and so when I was pregnant there were still doctors that would do amnio reductions that is pretty much all we had and they would drain the fluid off the baby that had too much amniotic fluid. They still do that today, it is still offered it is still a good option. It just depends on what symptoms the babies have. You actually have to qualify for laser surgery you can’t just get it because you want it or you have read about it.
It is considered the first choice for mostly stage two and higher. Moms really should go on horizontal rest that helps send more blood and oxygen to the placenta, it takes pressure off the uterus and there has been some research and slowly sipping some high protein drinks throughout the day such us boost high protein or other similar drinks like that because the mom can become very malnourished and so these are things that she can do right away as they are devising a good medical plan.
CHRISTINE STEWART-FITZGERALD: As far as the laser surgery goes can you tell us a little bit about the statistics for laser surgery? I mean do we have any success rates available?
MARY SLAMAN: I think what is really available for parents to know is that the laser centers there are about twenty in the country right now are really the true TTTS experts and to never really put a hundred percent faith in any of their doctors. It is important for them to reach out and contact the lasercenters themselves, ask their doctors to do the same and transfer medical records over of course. But every laser center is going to have different statistics for the surgery that they do. They are all going to have different levels of experience, some may have only done a hundred surgeries, someone else may have done a thousand surgeries. So it’s really important for them to be involved in reaching out to get that but all we know is that it is a very life-threatening situation for the babies.
I don't want parents to be afraid, I want them to always celebrate finding out that they are pregnant with identical twins, it’s a complete miracle and joy and not to be afraid to learn about TTTS because it will empower you and uplift you and create a better medical care for your babies. That is what I do with the foundation, if I'm talking to someone that is usually crying and in shock and can't speak at the beginning of a conversation and my goal is at the end that maybe even like laughing but they are so much stronger and they know what to do and they know what questions to ask and if some doctor says something can't be done they know to reach out to another doctor and get multiple opinions.
CHRISTINE STEWART-FITZGERALD: That’s a great note, we are going to take a break and when we come back we are going to talk with our parents about their experience in getting diagnosed and treated for TTTS
CHRISTINE STEWART-FITZGERALD: I just wanted to get a little bit more personal perspectives from our moms that are on the line, if you could just take a moment and just tell us a little bit about how in your situation were you diagnosed with TTTS and what type of treatment did you receive, Brooke.
BROOKE: It was around seventeen weeks when my doctor noticed that there was something off but I felt that the whole time they were looking at me even when they sent me to a specialty Obstetrics up in Delmar. The whole time they were just downplaying it and saying 'oh it’s not a big deal, if its TTTS you just go get the simple surgery and it’s not a big deal", so I was sent to the specialist and they contacted Dr. Smidge which ended up being that I was so lucky that we lived in San Diego and that he was located in Hollywood because I guess there is only a handful of surgeons in the Country that can even perform this procedure. So it wasn't like we lived in Texas and had to fly out to California.
Anyway, they were on the phone with him and he got a hold of our scans and he wanted to go ahead and see us. Prior to going up there his nurse called me and was like okay just so that you know we have this new segment that goes over everything, the whole surgery, why don't you go ahead and check that out so you have an idea what's going to possibly happen. We are going to schedule you for surgery just in case we need to move then.
So I went to their website completely blindsided because I felt like the whole time everyone was just downplaying it, they probably didn't want to get me scared which I could see that but I ended up having a call out at work because I was just so destroyed and I was like what? They are going to put lasers in me and my babies could possibly die. Then we went up to see the specialist and he diagnosed us with stage one, we just had the measurements and we didn't need surgery cause he only likes to perform surgery around the twenty-four week mark and if you are at stage two.
So we went home and I remember that car rides the air conditioning broke so we were up in Hollywood and it was as hot as hell and I was a roll of emotions. I wanted to wail this cry, it was just so heartbreaking to know that one could die, both of them could die and just knowing that it was a wait and see prognosis. Even them they just wanted to wait and see, it was just really in God's hand, so I really had like a come to Jesus moment and just uttered a prayer and tears and relying on friends and family and throughout the rest of my pregnancy every week I went and got scanned and our numbers were right below where it would be a concern. I had to spend five months on bed rest
CHRISTINE STEWART-FITZGERALD: That's a long time
BROOKE: It was in the middle of summer so it was so hot and I am like huge and just stuck in a bed and relying on people to feed me, I could barely take a shower but the good news is that they got here, they are fine and I ended up naming my daughter, baby A who was the smaller baby I named her Faith because through this whole experience I really found my faith with her and was thankful that God lets us keep our babies. So that is pretty much my experience. It was a hard pill to swallow to know because you are so excited, you are pregnant and I was working with a few other girls who were pregnant and I was like I'm having twins and then the reality of having twins is that automatically it is a higher risk pregnancy because your body is not supposed to make two babies. If you have identical twins it goes up further on the high-risk pregnancy and then all these other things start to come into play and it’s a lot, it’s a lot.
CHRISTINE STEWART-FITZGERALD: It is definitely a lot. Thanks Brooke for sharing your story and I want to catch Kristine since I know yours was a very different experience.
KRISTINE: I love hearing stories of hope about babies, identical twins I think it is beautiful and there is so much hope and there are so many babies saved. I just want to start with that. My experience is I was totally blindsided by having twins. We wanted to have another baby but we did not expect to have twins. I was really sick throughout my pregnancy and right about Christmas time I was probably around twenty-one weeks. I was sick throughout the whole pregnancy and I started to feel really sick around twenty-one weeks and I was thinking something is wrong. I was calling my OB a lot and it's just really sad to me because I did try to reach out to my OB about my symptoms and every time I called I kept getting oh it could be around ligament pain, it could be this, it could be food poisoning.
The last time I did speak with my OB she said well what do you expect? You are having twins this is what happens and before all these happened my OB and High Risk and I live in New York and these are supposed to be like the mecca of great doctors and one of my high-risk is all over some of the major hospitals around the area. It doesn’t really make a difference I think you have to be an advocate for yourself but they also advised me not to Google anything so I just left it in their hands and I kept calling and asking them what’s going on. I sent textbooks twin to twin symptoms to my OB that I felt suddenly huge, that sudden weight gain that you have to really look out for and she just told me that is what you expect, you are having twins.
She told me to wait and stay home. That was on a Wednesday, I was calling about a week earlier and it was all complaints then by Friday I went in and she said oh no, something is wrong, go your high risk. I went to the high risk and he said oh no something is wrong and he ushered me off to my generic counselor. At this point, neither of my doctors ever spoke to me about twin to twin transfusion syndrome.
I did say maybe two times I asked them but it was all upon my initiation and it always didn't worry, it’s so rare your babies are going to be fine. I was sent to the genetic counselor and I'm in total shock, I'm crying, I was alone there and she just said to me I've never even heard of this disease. What she was doing was she was trying to set me up with an appointment with a specialist in New York City to take a look at me and possible do the laser surgery. None of this was made clear to me, it was just we are trying to make an appointment, I was so devastated. I was sent home to wait and I waited four days till my appointment and with twin to twin you are so swollen with extra fluid. I was twenty-three weeks by the time I got to New York City the specialist said you are like a forty-week gestation size. They drained like five liters of fluid out of me.
CHRISTINE STEWART-FITZGERALD: Wow, oh my gosh
KRISTINE: What happened you know, Mary has been so great with the foundation. After I lost my babies, it really helps in the healing process to talk to experts. She even got me in touch with Doctor Delia who pioneered this laser surgery and he informed me that at that point your whole body is shutting down. Your baby’s bodies are shutting down but so is the mother’s. You are swelling everywhere so by the time I got to the specialist in New York City they were really shocked that I had waited but this was all advice by my high-risk and they told me the horrible statistics and again you are just devastated and you just want to run.
I literally ran out of the office because I was like I can't hear this but they said you are going to into labor in hours. I didn't really have a choice of getting to another hospital where they possibly do more surgeries but the specialist in New York City was really good to me.
The next day, sure enough, I started contracting and I also signed up and said fine let us do the laser surgery and by the time I go there they had to delay the surgery because I was contracting, but eventually they did get to do the surgery and I had a very complicated case of twin to twin. By the time I went to New York City they said it was stage three but my OB the high-risk OB was saying that I had stage one on Friday. So from Friday to Tuesday it progressed that fast. It just progresses really quickly and sadly after an hour of having laser surgery I lost my first baby twin A Robert. I think the surgery was just too much for him and we lost him. A week later we also lost my second baby Christopher.
CHRISTINE STEWART-FITZGERALD: Oh my gosh, I can only imagine a week apart. It’s had enough to lose your babies but then you've lost one and you are grieving for him but then you've got hope for the other one and then in this place of limbo and wondering, that would be horrible. I can just only imagine.
KRISTINE: It was a rough time a really rough time and I was just trying to remain calm to help save my second baby Christopher but it’s very difficult and again I'm just happy that everyone is talking about it and the thing that has gotten me through this is just trying to honor my babies in any way that I can. We do an annual balloon lift and my children are involved and I try as much as I can to send out bereavement packages for the twin to twin transfusion foundation to other mothers who have lost. I went to private therapy, I go to a bereavement loss you know all of these things have really helped me and I feel like you know in that way there is some hope and positivity because we just have to keep trying to save more babies and getting more information out there. In my mind, I am constantly questioning what if I got there sooner you know so I don't want that to happen to another family.
CHRISTINE STEWART-FITZGERALD: Yes the support aspect is so important and we are going to get to that in just a few minutes. I want to make sure we get a chance to Cassidy as well as Christine, you guys have been very patient in sharing your story’s so maybe Cassidy you can just give us a little nutshell of your experience in both of the diagnosis and the treatment of TTTS.
CASSIDY: Sure so my story is sort of unique in that I didn’t have any treatment and the diagnosis I think we’llnever know a hundred percent for sure that it was TTTS because it is diagnosed based on measurement that we had never taken and I didn’t have any symptoms of having twins at all. I don't know I am just a freak of nature I guess. As far as the treatment after the girls were born we were totally blindsided by the fact that we had two baby’s and because they were three weeks early we were not ready because it was my first pregnancy so we expected them or the one baby to be at least past my due date.
So we didn’t have the nursery set up, we didn’t have any clothes we only had one car seat, we were just not ready. It was a big morning but they were born at home with a midwife who was a twin mom herself which was a major life saver for us and she was like this is beyond my level of expertise. So she called the pediatrician friend who recommended that we go get some tests done because if it was really what she suspected then we needed to make sure they were okay and this was based on what the placenta looked like and what they look like and their size differences.
So we went into the hospital and had their hemoglobin levels tested because we were worried about heart issues and one was on the very low side and one was on the very high side but they weren’t alarming enough to really, it was more like this seem okay, we are going to wait and see and everything turned out fine. We ended up staying at the hospital for a few days just to keep an eye on things because we were you know everything was different now but fortunately everything turned out well and I am so grateful for that. At the same time, I wouldn’t change a thing because you all their moms are amazing because having had to go through the stress of everything that comes along with a twin pregnancy and a TTTS diagnosis it would have drastically changed our outcomes. I think it is so stressful to through that and we were inherently plotting along happily. So I really think things would have turned out differently had we been dealing with the weight of this diagnosis. Who knows what would have been different but we are thankful every day that our girls are healthy.
They got here somewhat differently than other twins, the Googling after the facts and the talking to doctors in the hospitals was definitely the sort of a scary thing especially to have them in my arms and have one be tiny and pale and one be much bigger and very red because of the differences in their blood. They are healthy and that's sort of my odd take on this and I have done a lot of research on this since and the more I learn the more I'm in awe of anyone who goes through this in real time and doesn’t just have it dropped in their lap.
CHRISTINE STEWART-FITZGERALD: Yes, I can imagine that sometimes the knowledge, knowledge is power but as you say you can be completely unaware and blissful but if you do have that knowledge there is the motions that go with that and the responsibility that goes with that and I'm sure it can be very burdensome. I want to check in with Kristine, you can tell us about your experience and how you were diagnosed as well.
KRISTINE: Well actually I have three other kids and all home births and very easy pregnant situations so this was a whole new deal. I did go in for an ultrasound early on and realized I had twins so I was automatically put through to maternal fetalmedicine group which was actually great because they were wonderful and they were definitely really on top of everything as far as knowing a lot about TTTS and that sought of thing. They said I should not worry about it that it is very rare but I did end up having TTTS. At eighteen weeks I started pre-TTTS and I think it was Brooke who said that hers went very fast, but yes it was really fast and just transitioned within a couple of days. I knew something was wrong and my abdomen go really tight and disdained and I was not just feeling right and I actually went in a day before my appointment was scheduled for my ultrasound and I just showed up and said something is wrong. That is when they noticed I was in stage three or that is what they classified it that day.
They immediately called and scheduled an appointment for me to go to Cincinnati and it was all absolutely terrifying. I go to Cincinnati and they did the scans. Like I had said before I was really lucky to have Mary because there is a lot of doom and gloom with the doctors. I loved some of my doctors but some can be very doom and gloom and it’s just terrifying sitting down for that big group meeting but to have Mary on my side so I could call her was really helpful because she is always very positive and uplifting which is wonderful.
We actually had a successful surgery. I had five vessels that the babies shared which they thought that there was going to be a lot more given my staging but there wasn't. Both babies were fine, they did say that on the MRI scan my donor baby, one of the doctors thought that she was going to suffer severe brain damage from the imaging but you can't go by imaging alone to really diagnose much of anything.
She beat the odds, they didn't feel like she was going to make it through the surgery and she did. He didn't feel like if she made it through the surgery she would ever be able to do anything or make it through the birth process. Both babies were born and we actually had to get induced at thirty-six weeks. I probably would still have been pregnant now if they hadn’t induced me and both girls there up score grades were great and they didn't have to go to the NICU.
My donor baby she does have a much smaller, she was right there on that border line microcephaly with her head size circumference because she did most likely suffer almost like strokes with lack of blood flow but with that said the doctors after she was born they were very positive with her upgrade being so good they said she might just need to catch up a little bit. She is feeding great and both babies are right on track. It’s been a blessing. The surgery was amazing, everything was amazing and terrifying.
CHRISTINE STEWART-FITZGERALD: Amazing and terrifying, that's probably a great way to summarize it. So, Mary we've had about really a variety of experiences here, maybe you can tell me in your dealing with families who have just recently been diagnosed with TTTS what do you tell them?
MARY SLAMAN: I really want them to know that their babies are just so extra special that they just need to look at this as getting extra special care for their babies. That there is really tremendous hope for them and there is nothing wrong with the babies. The focus is on the placenta, what we can do to make the placenta function better and no matter what they see on the ultrasound it can be reversible even at stage four. No matter what a doctor might say, I have helped many people with babies in stage four completely turn around and have normal healthy babies when they are born.
I just want them to really enjoy finding out that they are pregnant with twins and I know that they are in shock and devastated but there is hope and that I'm not going anywhere and I am going to be with them through this process and if they need help flying to a laser center then the foundation will help pay for that. We will just do whatever we can to be of help to them. They need to have hope that this can all turnaround and they should just focus on the fifteen questions that we have, the answers to those questions for their babies is what they really need to focus on, not necessarily what happened to someone else because every placenta is unique and different.
CHRISTINE STEWART-FITZGERALD: That's a great summary that we really can't expect to have the same experience as someone else and we should remain very helpful and positive. I like what you said earlier that sometimes it just getting to the right care provider who understands the challenges and I know we have to be our own health advocates. I want to encourage everyone out there just like other conditions, get educated and know what your options are and talk to your provider. Mary, maybe you can tell us a little bit about the type of support that you offer through your foundation.
MARY SLAMAN: The support that TTTS foundation offers is really full cycle from finding out you are pregnant with twins to being diagnosed all the way through the treatment. If your baby is on the neque if they have special needs and unfortunately if there is still a loss of one or both babies so I spend a lot of time on the phone, hours on the phone, hours in social media. We have seven different groups on Facebook for all those different categories of diagnosed special needs NICU, loss of one, loss of both and survivors. I am always trying to make sure that they are surrounded by people who have been through what they are going through that can uplift them and make them know that they are not alone going through this. I had a very devastating experience, there wasn't the internet, there was no one to talk to and I spent a good seven to eight months on bed rest just watching the seasons change.
I tell people I'm not a good role model for how I got through it at all but what they can take from me is to really make sure that they get into the care of doctors that would even give them their cell phones, I mean there are doctors out there that do that. Any family member that wants to talk to me, a mother, a grandmother, the father, I do a lot of support on speaker phones with families in the room, I do everything I can to just get everyone on the same page and let them understand that they are not alone and hundreds of people are going to be praying for them and throughout the entire process we are going to be there for them.
CHRISTINE STEWART-FITZGERALD: Wow, Mary you know I just have to say I applauded you for all of your efforts over the last twenty ‘seven years. I can only imagine how many thousands of families that you've helped over this time and just bringing so much more awareness and comfort to so many families. I know it’s great that we have guests on today who have been both receipts of support and now they are continuing on in the giving of offering support to other families experiencing this. It touches me personally; I really applauded you and appreciate that.
MARY SLAMAN: Thank you, when I talk to people honestly I'm almost talking to myself, that twenty-four-year-old girl lying in bed who didn't have anybody to talk to, I almost envision me. On the other end and I truly want from my heart want to make it better for them than it was for me.
CHRISTINE STEWART-FITZGERALD: Thank you. Thanks so much to our parents for joining us today and be sure to visit our episode page on our website for more information about TTTS as well as links to additional resources.
This conversation continues for members of our twin talks club. After the show, we are going to talk with Mary about how her foundation is supporting families through this trial of TTTS. For more information about the Twin Talks Club, visit our website on www.newmommymedia.com.
SUNNY GAULT: Before we are up our show we are going to talk about a “Twin Oops”. This is a segment that our listeners can participate in. I have told you guys about it earlier it’s one of my favorite segments because it allows us to share our funny stories. This one comes from Carey, we posted this on the multiples of American Facebook page and this is what she responded with. She says my boys started looking totally identical around the two-month mark month so one night I was brave enough to put them in matching gummies but I kept their hats on so I could tell them apart. Well, I went to change them before bed and it's warmer upstairs than downstairs, the changing table is upstairs in their room. I pull their hats off and I was just ladling while changing diapers and I totally forgot which one I was changing so I had to strip them down and look at their belly buttons because one of my twins has an A to it then B has an outie so that's how I was able to finally tell them apart.
I think we all with identical twins can be like yeah there's been some time that I've had to do a double-take at the very least and been like who's who now, so mixing of twins can be easy depending on how much your twins look alike right? Well, Carey thank you so much for sending this and we really do appreciate it. If anyone has a twin oops out there that you want to share with us we would love to share it on the show. You can visit our website at newmommymedia.com and leave us a voice mail. You can do that through the website or you can just us an email and then you can also comment on our Facebook page and we'll be happy to share it on our show.
CHRISTINE STEWART-FITZGERALD: That wraps up our show for today, we appreciate your listening to twin talks.
Don’t forget to check out our sister show:
• Preggie Pals for expecting parents
• The Boob Group for moms who give breast milk to their babies
• Parent Savers for moms and dads with infants and toddlers and
• Newbies for newly postpartum moms
This is twin talks, parenting times two.
This has been a New Mommy Media production. The information and material contained in this episode are presented for educational purposes only. Statements and opinions expressed in this episode are not necessarily those of New Mommy Media and should not be considered facts. While such information and materials are believed to be accurate, it is not intended to replace or substitute for professional, medical advice or care and should not be used for diagnosing or treating health care problem or disease or prescribing any medications. If you have questions or concerns regarding your physical or mental health or the health of your baby, please seek assistance from a qualified health care provider.
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