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Twin-to-Twin Transfusion Syndrome (TTTS)
Reader's Questions and Answers: |
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NOTE: Answers provided are of a general nature only and in no way reflect a medical opinion or diagnosis. If you are in doubt about any aspect of your pregnancy, please consult your physician immediately.
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March, 2010
Hi my name is Seneca. I live in Florida. I had twin girls born on Sept 30, 08. They were born with TTTS. I have a few questions about long long term effects that may be caused by the disorder.
From Lynda:
Hi Seneca, Thank you for your note. I regret to say that I am unable to give you any feedback in this regard. I am not medically trained and no doubt each of your girls would have been affected, if at all, in different ways and degrees, to which I am not party. Your Little Ones would need to be evaluated by a professional medical person as they mature in order to ascertain what their personal situation would be vis-a-vis the TTTS they experienced. With having the girls right in front of the doctor, the assessments would be more pertinent.
All the very best,
Lynda
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January, 2010
hi I was pregnant with identical twins and it was discovered at 20 weeks they had TTTS. I had the laser surgery and unfortunalty the larger twin passed an hour after operation due to heart failure. I am now 22 weeks 3 days and terrified. I had no counselling or after care and I feel empty. I have been told I am more likely to go into labour due to the operation, is it true that I am technically safe after 24 weeks to go into labour everyone is telling me different things ? thank you jo
From Lynda:
Hello, I am so sorry to hear of the loss of your precious baby. I wish I could tell you definitively what to expect. I am not medically trained, nor do I have knowledge of your personal medical situation. I can, however, let you know what I have learned from over 25 years of supporting families with multiples.
When families find themselves in the position you are currently in, it is true that you can expect to deliver early, i.e. before 38 weeks. How early depends on your personal medical situation. In my opinion and experience, 24 weeks is still too early. Even so, we cannot say when we will deliver and the decision is completely up to Mother Nature. We can stack the cards in our favour as best we can. You should now be considered High Risk with your doctor and both you and your baby need to be monitored regularly, i.e. at least once a week, earlier if there are any issues for any one of you. Do you know why you were told you are likely to go into preterm labour? I would like to know why it is felt that I would go into labour? Is there something with the survivor, yourself or the deceased wee babe? If yes, what is the issue(s)?
I have worked with several parents whom have had a baby pass away in utero and as long as the survivor is healthy, things have progressed through to a healthy birth at various gestational ages. In many cases, parents need a death plan as well as a birth plan, so that there is something in place for the deceased baby. You can let the hospital take care of the remains, or you can arrange your own funeral. In my area, funerals for infants under two years old are free from many of our funeral homes.
From this point forward, be aware of what is going on with your body and if you feel there are any issues, e.g. bleeding, excessive lower back pain, even a general feeling that things "aren't right," then go to the emergency and have yourself and baby checked out. It is better to make sure all is well than be too late for the doctors to try and stop labour or give you steroids to help the baby's lungs to develop.
Ideally, babies are in utero for about 40 weeks. 24 weeks is still too early and even though I am aware of births at 25 weeks with no issues, there are just no guarantees. Every day still in utero helps in the count up.
Other things you can do, is eat nutritiously, no smoking or around secondhand smoke, no alcohol, rest as often as possible with your feet up but not higher than your toosh, so you look like an 'L' and of course keep all your regular doctor appointments.
I do hope these few ideas help you keep your little one in utero as long as possible. Please write again if you wish.
Please accept my sincere condolences on your loss.
Enclosing best wishes. Lynda
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November, 2007
I have a friend that just tonight lost a twin from TTTS. She is in her room holding the deceased baby, that is very very blue, while the surviving baby and his father have gone to another hospital for a transfusion. Can you explain why the deceased baby is larger by more than one pound? He is perfectly formed and looks totally like a health full term baby. The mother was at 35 weeks. Last week at her appointment all was normal. She was on bed rest and did have gestational diabetes. We are all at a loss for words and need to know more. Can you help? Paula, Ga
From Lynda:
Hello, I am so sorry to hear of your friend's loss. Nothing about losing a baby is fair, or even understandable. Everything about it is wrong. TTTS only occurs with monozygotic babies (identical) and they can occur in triplets and up too, when two of the set are monozygotic. It boggles the mind why the larger baby would be the one to die, but in lay terms what happens is that their zygote split about 24-48 hours later than some do to make the two fetuses. Because of that, when they landed in the uterus, the zygotes were close together and their veins and arteries inter-mingled instead of each having their own, separate set. As a result the babies shared the available maternal nutrition but it went very quickly through the smaller baby (doner) not allowing him/her enough time to absorb the nutrition he needed to grow and develop and it pooled in the larger baby (recipient), causing stress to all major organs. In this scenario, both babies are at risk and depending upon the degree of the TTTS (TTTS has a spectrum of mild to severe), one or both babies is affected to some degree. Usually the smaller baby is wizen and pale because she didn't receive the nutrition she needed and the other had to deal with too much nutrition and was unable to deal with the excess fluids and excretions before some or all major organs failed. The larger baby is usually red and "swollen" looking as a result. You are right, they look perfectly formed, except for colour. The stress is all on the inside. It does sound as if the smaller baby also had some difficulties if he/she was taken for a blood transfusion. If you find you have more questions after reading this, don't hesitate to ask away. I have an article on my Site Grief - How Can I Help? if you think that would help you support your friend. It is OK to say the deceased baby's name as no doubt your friend and her husband will want to talk about him or her. It's natural. Listening is good and do try not to feel guilty. You cannot change what has happened and it is not your fault but listening, being there, perhaps crying with them, is all helpful. You might make a donation to the hospital in the baby's name, or other children's institution (school library, park, or so on). I hope this is helpful.
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July, 2007
Dear Lynda. I have been reading about you and your articles. First of all I think that you are an angel! The world could really use more angels like you. I am a 24 year old from Brooklyn, New York expecting my first (twins). They are identical girls .I am 19 weeks. Yesterday I was told that they have TTTS. Me and my husband are devastated, but we decided to be positive and try to fight this horrible situation. Tomorrow we are going to see a high risk specialist. We are not going to give up hope. Reading your article was so informative because we were so lost on this subject. God bless you Lynda and take care. Sincerely Lisa F., New York City
From Lynda:
Hey Lisa, thank you so much for your kind words and a Huge Congratulations on expecting twin daughters! Very cool indeed.
I hope today's appointment went well and that you have learned a little more about your particular situation. It was very smart of you to do you own research on TTTS and not leave it all to the docs (who are more than capable but we need to know about our health). Knowledge is power. You shouldn't give up hope at all. Things can go very well with TTTS, especially with a heads up, which you have. I know of many families whom have done very well with this diagnosis. You can expect to deliver early and how early will depend upon how your little Munchkins are reacting in utero. You can expect more doctor's visits so that they babes can be monitored - all good.
Do write me again and let me know how things are going. I am glad the article was helpful. Using languages that parents could understand was very important to me. There is enough going on without having to shift through medical jargon!
Enclosing the very best of wishes,
Lynda
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July, 2007
6 years ago I gave birth to twin boys at 33 weeks. I was told they had twin to twin at 20 weeks, and began weekly sonograms to moniter their health. They had one placenta, but their own amniotic sacs. Twin A was smaller and twin B was bigger, but it was twin B (now known as Ian) who was of most concern. I had my c section when they became concerned with him having heart failure. Baby A (now known as James) was fine from the get go, and was able to come home after only one week - even though his birth weight was only 4lbs 14oz. Ian was 6lbs 4oz., but was in for a month. Why is that? Also, my doctor told me the only way to be sure they were identical was through DNA, and they both have different birthmarks. Can fraternal twins EVER have twin to twin and a shared placenta? They also are easy to tell apart, one is a lefty-one a righty, and as different as night and day. They have never exhibited any special identical twin "stuff", like special communication or anything. Also, they seem to be perfectly healthy now. Are there any things that I should look at and alert their pediatrican about in regards to further development?? Sorry for the earful of questions! Thanks-in advance.
From Lynda:
Hi, thank you for your questions. TTTS only occurs in monozygotic (identical) babies, even within a higher order set, if it is going to occur. TTTS has a spectrum from mild to severe as does how much monozygotic children look alike, i.e. look a lot alike, to many differences. It sounds as if your sons might also be "mirror twins," which means certain aspects are opposite, such as righthanded/lefthanded or hair whorls. DNA will confirm they are monozygotic (its a cheek swab these days), and would probably be just a formality as the TTTS would have also confirmed they are monozygotic. Not all twins use special communication, in fact, most do not. TTTS usually gives them a slower start to life and then things sort themselves out and all is well health wise. It is not unusual for the heaviest twin in the TTTS situation to have the most health problems. He, the recipient, was unable to properly get rid of the excess fluids received as a result of the TTTS and it sounds as if the hospital erred on the side of caution and kept him some extra time to ensure his major organs were not affected by the overload. I hope this is helpful. Enjoys those young sons of yours.
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May, 2007
Hi, the first thing I would like to address is the effect of serial ultrasounds on the babies. In this condition, growth optimization is paramount and serial ultrasounds have proven to hinder the growth of neonates in the third trimester. I believe there is more to it than what the research actually shows. I have twins that appeared to have TTTS, though we didn't have ultrasounds and a difference in size was the only symptom we were aware of. My smaller twin had a velamentous cord insertion where the cord was attached to the amniotic sac instead of the placenta. I could trace the blood vessels down the membranes into the marginal edge of the placenta, in fact losing part of the "trail" on the way. I do have a picture of the initial attachment. When they were born, 5 weeks early at home and both footling breech, I noted they had separate sacs as both of their waters broke within minutes of birth and it seemed they had near the same amount of fluid. My point is my experience shows that much of the information available, even from the research, may not be as accurate as it appears. Some simple things might be less observed in the cesarean section most commonly involved with this condition.
From Lynda:
Hi, thank you for sharing your experience. It is so difficult to "say" anything for sure, especially medically. The moment one does, an example to the contrary or showing something very different can occur. We know so little about what goes on with the body and even with informative tools such as ultrasound, things can turn out differently. I've had many couples over the years tell me they are having "identical boys" or "two girls," only to have one of each arrive. I think the point is that as consumers we need to keep ourselves informed, learn as much as we can about our own particular situation, and get the best help and healthcare support we can. I am very pleased to hear that things went well with your birth and your babies. That, after all, is the bottom line. Enjoy those little ones!
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January, 2006
I was pregnant with identical twin boys last year and at my 20 week scan they were doing great but just 2 weeks later on my next scan I was devastated to find out they had died, possibly 10 days earlier my consultant said. I had no idea that there was anything wrong or that it could so quickly. My life changed forever that day and I will always think about my beautiful George and Alfie but I wonder all the time why did they have to die at all?
From Lynda:
Hi, I am so sorry to hear of the loss of your baby boys. TTTS has a spectrum from mild to severe, the latter being fatal. It becomes an issue for the babies around about week 18. It is not your fault, you didn't do anything wrong, neither did your body. This was beyond your control and nevertheless is so unfair! Yes your future is now different. You have learned that the world can be a difficult place. Nothing about this is easy. And of course you will miss them. You are their Mom. I encourage you to seek some grief counselling, even for a little while if you need to, to surround yourself with positive people and take good care of yourself. Please feel free to write me any time you wish.
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June, 2005
In January of this year I lost twin girls to twin to twin. I was 17 weeks and five days. If I fall pregnant again with twins is there a chance this could happen again? and at my age 37, what is the chance of falling for twins again? I miss my girls so much. Their due date was 18th June this year.
From Lynda:
I am so sorry to hear of the loss of your precious daughters. About 18 weeks when, if monozygotic (identical) babies have TTTS is when it begins to be a problem for them. It is important to learn whether or not you are carrying multiples, then if they are monozygotic or dizygotic (fraternal) and then if the former if they have TTTS. We talk about it in our multiple birth prenatal classes because it is important to know ahead of time so that, if possible, it can be monitored. TTTS, if it is going to happen, only occurs with monozygotics, and can happen within triplets or more. Once you have conceived multiples without fertility assistance, you up your chances 50% again of conceiving them again. And yes, your age will be a factor in your conceiving twins again. There is no guarantee one way or the other that this would happen to you again. Each pregnancy is different, even for the same woman. Having said that, no doubt you will be very nervous for the duration of your next pregnancy, that would be normal.
There is an article on my Site entitled, Trying Again After Loss. Have a look at it and hopefully it will be of support to you and your partner.
Of course you miss your girls! That is normal and of course they should be here, with you and their Dad, in your loving arms. I hope you took the day and did something special in their memory.
Please feel free to write to me again, if you need to. I enclose very best wishes.
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June, 2005
My brother and sister-in-law are at 23 weeks with "stuck twin". Isn't there any way to feed the donor baby with transfusions? Any idea what the babies' mental health situation will be if they do survive? Is it impossible to have 2 healthy babies? Thanks - please pray for Tim and Andrea.
From Lynda:
I am sorry to hear of the situation with your brother and sister-in-law. I've not heard the term 'stuck twin' before. No, there isn't any way to 'feed' the donor twin. TTTS is a problem for both babies because TTTS affects the major organs. To feed the donor twin would be added stress on underdeveloped organs and jeopardize the whole pregnancy. TTTS is a spectrum from mild to severe and there is no way of knowing until after birth where the babies fit on that scale, so it is impossible to guess regarding their mental health. Sometimes TTTS can be monitored with the removal of extra amniotic fluid, often on a weekly basis, from the recipient twin (actually the opposite of what you were suggesting) until birth and sometimes, depending on each individual situation, shared veins and arteries can be lasered shut, thus giving each baby a better chance at survival. At 23 weeks, these babies are still very underdeveloped and need to be in utero for ideally at least another 7 weeks or more. Your brother's doctor will be able to provide more detailed information and feedback.
I will indeed, pray for your family. I am available should you need to write again.
Enclosing very best wishes.
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June, 2005
I lost identical twin girls at 23 1/2 weeks to TTTS. We had no idea we were having identical twins until I went into the hospital with pre-term labor. We did a amnio. procedure and then my water broke where I had to deliver. They weighed the same and were the same length. They lived a 1/2 hour. My question is could there have been anything else that could have been done? I have two children already and am wondering if this could happen again to us if we try again?
From Lynda:
Hello, I am so sorry to hear of the loss of your precious daughters. In our multiple birth prenatal classes, we encourage parents to find ASAP if they are expecting monozygotic (identical) babies, even for triplets and more, and then to try to find out if any of the babies have TTTS. It is extremely important to know if they have TTTS so that they can be carefully monitored. TTTS has a spectrum from mild to severe and in some cases, it can be monitored and sometimes the babies can have laser treatment to seal off shared veins and arteries. Severe cases are nearly always fatal to one or both babies. In the higher order multiples set, TTTS amongst monozygotics within the set, can cause the loss of the complete pregnancy. As you can tell, there are no easy answers and each case needs to be evaluated individually. With regards to your question about TTTS happening to you again, there are no guarantees but the chances are very slim. Each pregnancy is different, even for the same woman. What would happen for sure is that you will be monitored very closely and carefully by your doctor considering your history. This will be extremely helpful. Just a note, this is not your fault. You did not cause this to happen. It is something that was beyond anyone's control. I hope this information is helpful to you and enclose very best wishes.
Feedback:
Hi, My name is Sharon. I'd like to tell you my story. Back in November of 1998, I was diagnosed with twins when I went for an ultrasound at 20 weeks. The doctor told me that the girls were sharing a placenta. I asked what that meant, and he replied that "there are winners, and there are losers". This was my first pregnancy, so I thought that this doctor just had no bedside manner. I was so excited about having twins, that I didn't take what he said seriously. I also thought that if there was a problem, they would tell me.
When I went to my next doctor's appointment and mentioned the twins sharing a placenta they shrugged it off. At the next ultrasound everything was fine, the girls were just about the same size. In January I went for an ultrasound and they found that "twin B" had no heartbeat. They sent me to my doctor, and he said it probably was twin twin transfusion.
I accepted what he said and very luckily went on to have one healthy baby. I did non-stress tests and biophysicals twice weekly, blood tests once a week, and ultrasounds once a month.
I guess my question to you is--Do you have to have all of the symptoms to have TTS? All I had was a single placenta and same sex babies. I read your article, and just got upset and mad when I think that my doctors didn't take my situation seriously enough when they found it. With more care I feel like possibly I could have had two healthy babies. Is it possible to have two healthy babies who have TTS? I guess I'm just looking for answers to questions that I should have had years ago. I was very naive with my first pregnancy. I just assumed the doctors would let me know of any problems. I miss my daughter, but I know that I am very lucky to have the healthy one that I have. Thanks for your time. If you can please answer my questions. Thank you, Sharon
From Lynda:
Hi Sharon, I am sorry to hear of your loss of your daughter. TTTS occurs only with monozygotic (identical) babies. There is a spectrum for it, of mild to severe, which means loss at the severe end. TTTS can be monitored and treated in many cases. We always talk about it in our prenatal classes because there is usually at least one case in the class (one class had 5 cases). It is important for parents to be aware of what it is, to ascertain if they are carrying monozygotic babies and then if it can be treated.
I don't understand your Dr's comment. It doesn't make any sense to me. Unfortunately, we sometimes think that Drs. have all of the answers, are on the same page as we are and will inform us appropriately. Sadly, you have learned that this is not always the case. It is extremely important that people be actively involved in their healthcare and that they understand what is occurring. Questions need to be asked until you understand the answers. If necessary write them down ahead of time. Let your Dr. know that you need an appointment to ask a lot of questions and they keep asking questions until you understand. While there is no guarantee that your outcome would have been any different even carefully monitored as their TTTS may have been severe, I can understand your need for answers. You could ask for your records and then ask either your Dr. or another one to explain what occurred so you can better understand.
Anyone carrying multiples, including triplets and higher, needs to know if the babies have TTTS. Then they need appropriate care and possible intervention to help the pregnancy through to a healthy ending, if at all possible.
I am so sorry you lost your daughter. It is not easy, I am sure, looking at your sweet daughter and knowing that there should have been two. And your daughter is deprived of a unique sibling relationship. May I ask if you would let me post your story on my Web Site? It may prompt another family to be as involved as possible in their own health care.
All the very best.
Feedback:
Six weeks ago my girl twins were 1 ounce in weight apart, now they are 10 ounces apart in weight. I'm 30 wks, my doctor doesn't seem worried and wants me back in 3 weeks. Should I be worried??
From Lynda:
Hi, Thank you for your question. I don't know your personal situation and am not a medical person, but if you are worried, make an appointment to see him for discussion. Why don't you run off the article and take it to him just in case he isn't aware of the potential problems? Ask questions until you understand the answers. Someone should go with you, either your partner, parent, sister or close friend so that at least two of you are hearing the information. Increasing weight discrepancies between the babies could be cause for concern.
These are your babies and already as their parent, you can be proactive and ask questions.
All the very best.
Feedback:
Dear Lynda, my wife is now in [her] 28th week of pregnancy. Our twins are dizygotical (boy and girl). Our doctrors diagnosed TTTS. Everywhere I can read that TTTS is possible just in the case of identical twins. In the end of 26 weeks boy was 580 grams and girl 800 grams. In the end of 27 weeks boy was 630 grams girl was 1000 grams. Could it be theoretically possible that it is TTTS even though we have not identical twins? Or could it be somethink else? What are the options? What should we do? Our doctors sugested to wait and see. Thank you very much for any advice. PS: We are from Prague, Czech Republic
From Lynda:
Hello, congratulations on your impending birth - a son and a daughter, how wonderful is that!
TTTS can only occur in monozygotic babies, including within triplets and higher. TTTS is a result of the splitting occurring later and the eggs imbedding in the uterine wall very close together, resulting in a mixing of veins and arteries, as the article explains. Such would not be the case with dizygotics. They are two distinctly different embryos within their own sacs.
I am not sure why there would be such a discrepancy in the weights of your babies, but the good news is that both are growing. It is the comparison between them that may create some concern but seeing as both are gaining, this is very good news. 28 weeks is also very good for helping your babies get a good start. I would agree with your Dr. on the "wait and see," and if you notice anything "different" in your pregnancy, even a feeling of "something different," check in with your doctor right away. This is to err on the side of caution and to make haste to give the babies the best chance. After the babies are born, you may ask the doctor to examine the placentas and see if they can find out why there was a discrepancy in the weights.
All the very best. Please write again and let me know how you and your babies are.
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