Monday, March 26, 2012
Am I a TTTS-Survivor?
Recently I gave the thought some room why my mother wasn't more shocked by having a miscarriage. Knowing my mother she could just have been occupied with something else and not notice much, but to give her credit I think she would have been more troubled had she lost a lot of blood. So, that she didn't indicates the placenta did not abrupt and this might indicate a single placenta, a monochorionic pregnancy. Some of my mother's symptoms match the placental disease of TTTS, Twin-to-twin-transfusion.syndrome. To make a long story short in those cases one twin gets too much blood and the other one not enough. It's very dangerous for both twins and even today where laser surgery is available sometimes both babies die. The twin who doesn't get enough blood - called the donor - often has little or no amniotic fluid, gets "stuck", is delayed in growth while the other twin - called the receptor or recipient - develops hydrops (fluid under the skin), has far too much amniotic fluid and often suffers from heart-failure due to having to pump too much blood. IF my mother had it - and there will never be any proof - it might explain the small size of the fetus, that it was able to slip out at all, and the symptoms she felt on herself like high blood-pressure, kidney failure and such which took her hospitalized sometime in March '63. Also, I had some symptoms that might be associated with TTTS at birth like a very large placenta and an umbilical cord unusually thick. Also, IF my mother had TTTS my twin most probably was a girl, although in v ery, very rare cases TTTS develops between fraternal twins, too, when their placentae fuse.
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Hey Anjy,
ReplyDeleteI recently had TTTS and my surviving son is about to turn 1 years old. I often wonder if he will miss his brother who died in utero just shy of 20 weeks. Can you shed some light on your feelings growing up and when you found out about your twin? I want him to know just how special he is. That he is not a singleton, but has a bound with his angel brother.
Hello, harrleequinn, I'm glqd you want your son to be aware of his twin early. I spend 44 yearsd not knowing what was wrong with me and swaying from being called "a mystic" to "personality disorder" and back. Basically I always felt like I didn't know who I was and as if I "wasn't really there". These sentences I repeated over and over to counsellors, shrinks, doctors. I even considered being an alien for a short time ;-). These symptoms are typical for people who lost a twin in utero. Also I used to talk to an invisible friend, well, the past tense is not strictly true. I STILL talk to somebody invisble, and while this is normal more or less for four-year-olds it certainly isn't normal for 49 year-olds :-). As for physical symptoms I am convinced having TTTS burdens surviving children with more than just unbalanced amount of fluid. Being stuck with to little fluid, living under constant presure because of too much, being in danger of dying are very real things to a human being no matter which age. Your son has lived through a very threatening experience. That may cause him no harm at all if he gets the help he needs now: love and comfort and above all safety. I have suffered from a profound sense of not being safe all my life. I am sure every TTTS-survivor should be treated like a veteran - AND get a medal :-). For the time being I would just closely watch your son, maybe be a little over-protective ;-) and when he starts asking question tell him the truth. To have had a twin in utero IS special but it also makes for special problems. Maybe, if he comes up with asking where his brother is - some twins do that without ever having been told - you can tell him "that's because you are a twin". Or,since some twins like to buy two of everything, this line could also come in then. I hope your son will become a very proud and strong survivor, proud also of his brave brother who fought alongside him and didn't make it to THIS life. Still - there is more to life than we often think ... :-)
DeleteThanks for responding and blogging about this. I know the whole family feels his loss and we feel slighted from having not known him in this world, except those 19 weeks in utero he was with us and his brother. Research says that a twin is aware of his other twin as early as 12 weeks. I often hope that our survivor will have an imaginary friend or ask me out of the blue about his brother. It will make it easier to tell him. He has sleep terrors at such a young age and I don't want to project upon him what causes them, but I do think it has to do with his brother. He spent from week 19 to the day he was born laying with his deceased brother. I had a surgery to save them both. His brother survived right after surgery but died the next day. Because the connections to them were cauterized, they did not have to induce labor for our survivor. The doctors told me that he would be absorbed back into the placenta, but boy were they wrong. After I gave birth, I had to give birth to our deceased son. He was mummified and attached to my placenta wall, but he was clearly visible. We had him cremated and take him to all major events that he would have been involved in. Because he was 1 week shy of being considered a still born (20 weeks), we have no record of his death or birth. TTTS is one of the hardest things to endure as a family. And each case is different. Your blog and book recommendations have been very helpful. I am more focused now on twinless twins than on TTTS. I will never forget when the nurses said to write it up as a singleton birth and I was so exhausted, I couldn't speak up and say that he was a twin. It bothers me when others don't acknowledge that fact. I am trying to do some research as I would like to get a book together for young children and their parents. Hopefully the book will help to make it easier to explain things. My family and friends don't get it. They think I should keep his twin hush-hush. How can you when he was just as real as his brother is?
ReplyDeleteIsn't it amazing how many people seem to believe there is no life before birth? We know that unborn babies react to, say, in utero amniocentesis, Alessandra Piontelli did an u/s-study on twins in utero and found them reacting a lot and still people are convinced this doesn't affect n the least the brain growing and developing more than ever after during this period. I have panic issues that cannot be traced back to any event during my life after birth and still I found only one professional psychologist who consented to even think about a prenatal cause.
ReplyDeletewe must be careful, though, not to project postnatal categories onto our children. Prenatal memories are mostly physical. The body remembers everything. The mind which after having gained speech is very hard put to express anything that happened before words came into power. Words like "missing", "love", even "twins" - they all come after, a long time after the actual experience and they never quite express it like it was. Us early-loss twinless twins tend to adopt the experiences of later-loss twins and talk about our in-utero experiences like they happened to somebody who could already talk. We have no other choice. Once you entered the World of Words there is no other way to express and communicate yourself. But twinloss that happened before words is different and will continue to be.You are right, it would be easiest if your son voiced his experiences, but if he doesn't they may still be very real to him and the only way to find out about them is to be near to him, spend a lot of time with him, know him very well and accept him the way he is. I'm sure you are doing all this anyway, though :-)))))