A Meeting Place for Early loss twins

This is really my twin's Enjy's place, not mine. S/He does not have any other place in this world. S/He was miscarried at age four months in the womb. We were twins and made to be together for years and we were torn apart within seconds. This is the place where I go to talk to him/her and about him/her. Anyone who has lost a twin in utero or very early is very welcome here to read and share.
Anjy

Sunday, December 16, 2018

Books on Twinloss N° 14 "The One Left Behind" by Willo Davis Roberts

This small book is one of my favourites. In no more than 140 pages we learn how the loss of a twin differently affects a family and the surviving twin. Acclaimed writer Willo Davis Roberts (1949-2004) introduces the reader to the Sebold family, five boys in different stages of teenage and young adult, schizophrenic uncle Frank (quite a dear) and 11-year old Mandy whose identical twin sister Angel died one year ago.
The family is close but, as it turns out, not close enough to notice that in the general hubbubb of planning a weekend with the parents gone to celebrate their 24th wedding anniversary, Mandy gets left behind at home on her own.
Mandy is left alone in more than one sense. Her family, although grieving for her sister Angel after she died from accidental food poisoning, has moved on. Her brother Bert is newly married, the other brothers have sports and peers and girls to fill their lives. Mandy is drifting through an everyday life that no longer feels like hers and the others don't seem to notice. And now she is left behind when everybody rushes away for the weekend.
Willo Davis Roberts perfectly captures the situation of the young surviving twin in the lines "It occurred to her now, in the middle of the night in the huge silent house, that even if the entire family had been home, she would still be alone. She could not reach out and touch any of them, nor would it mean anything if she could." (p.4)

I sometimes think no more words are needed to describe the feelings of a twinless twin.

But, of course, the book uses some more words, and so we learn about the relationship between Angel and Mandy. How Angel had always been "the best and the smartest and the prettiest" (p.13), the daring one, the one to intiate social contact, and how Mandy realises she is lost without her sister. Their make-believe games played in the coastal area they live in, involving rather risky trips to the beach and deserted lighthouses, for instance, were the twins' favourite past time, and Mandy tries to carry them on on her own. She knows Angel so well she is able to provide her parts as well as her own. The make-believe turns into the life line the little girl unconsciously uses to survive the unsurvivable: the loss of her twin.
And then suspense is added. Willo Davis Roberts was known to write stories full of suspense, mysterious figures and crime and "The One Left Behind" is no exception. First there are noises in the house, empty but for Mandy and the giant family dog, Herry. Then there are foot prints in the sand and a wrecked car in the undergrowth. Mandy knows Angel would not have left any of these things unexplored, and neither does she.

The story of Xander, the boy who kidnapped his little brother from a devious baby-sitter and went to hide at his great-grandmother's beach house not knowing she passed away some time ago, interweaves with Mandy's left-behindness. It's Angel's presence, her sense of still being a twin, that allows Mandy to deal with the situation, make decisions and in the end bring a highly dangerous situation to a good end.
Of course, big dog Herry and her mother's schizophrenic brother Frank also play a part in this, together with the local police officer Clancy who never before had such a crime at his hands. He quite rises to the occasion.

The setting, all in all, is a close-knitted community where people, even the weird ones, look out for one another, and that makes the book thoroughly endearing. The largely unnoticed loneliness of the twinless twin runs like an undercurrent through the story, and is brought to an end satisfactiory for the reader in the concluding lines from Mandy's thoughts that "she was pretty sure that from now on, even all by herself, she would be able to lean on what Angel would have thought or said. Because she knew Angel that well. Nobody would ever be able to change that." (p.138)

It's a childrens book, after all, and the pain and loneliness have to morph into something hopeful for the future, but it's also a book for twinless twins of all ages to spend an hour or two on and savour some lines which really hit the nail on the head. I like to come back to it again and again.

Monday, November 5, 2018

The Drums of Survivor's Guilt

WHY? WHY YOU? WHY NOT ME? WAS IT MY FAULT? WHAT COULD I HAVE DONE TO SAVE YOU?
Early loss surviving twins have these words like a drum beat in the background of their lives. While twins who lose their twins later in life may be subject to a shrill cacophony of these very words, piercing their souls - especially when suicide is involved - early loss twins may go for years without consciously realising the drums are there. They have become a part of everyday life. But they are there, and they are beating on. And on. And on.

Sometimes they are fuelled by heartless - and thoughtless - remarks like "you ate all the food" or even "you ate your twin". Such remarks are not only heartless and thoughtless, theyare utter nonsense. If one twin in utero isn't nourished as well as the other, there are medical reasons for this, never, NEVER, an activity by the other twin. The most common reason is Twin To Twin Transfusion Syndrome (TTTS), in which a pathological connection between blood vessels in the placenta causes the malnourishment in one twin. This, still severe, complication may result in the death of one or both twins, but the twin who is more at risk is almost always the one who gets more blood and seems to be better nourished. The added fluid the so-called Receptor-twin receives puts the heart under severe and possibly fatal stress. So not even in that case when the BS remark quoted above MIGHT be backed by a medical condition would the twin who "ate more" be at fault. Not. One, Tiny. Bit.

In those rare cases when a medical condition MIGHT be interpreted as "you ate your twin", when a fetus-in-fetu is found (the remnants of a deceased embryo found within a living child, mostly found at an early age and at first diagnosed as a tumor), the underlying process of one embryo absorbing the other one happens very early in the pregnancy, long before the twins interact, so that not even a shred of anything similar to a voluntary action can have been present.

In most cases survivor's guilt doesn't need stupid remarks to be sparked. It's just there.
The WHY-question harasses parents, grandparents, siblings alike every time a baby dies, before or after birth. Why should a baby die? It's so completely without sense or reason that life should be gone so soon after it even began, but statistics show that a third of all confirmed pregnancies end in a miscarriage. Singleton babies die unexpectedly in the womb and everybody admits it's a tragedy. When a twin dies, it's more complicated. Mothers think they have no right to grieve since they still have one living child. People, well meaning but every bit as heart- and thoughtless as the ones quoted above, might even say "you still have one baby left."
Nobody, NOBODY, would say that to parents of two children, born two years apart, when one of those tragically dies. "So little Adrian drowned when you were on holidays at the seaside? How very tragic, but at least you have his sister Corinna left. " You see? Unimaginable.

But because grief for a twin baby is complicated for parents the survivor's problems with it often go unnoticed. They, too, may think "I'm not allowed to grieve. I never 'knew' my twin. I have to be happy to be alive. I mustn't add to my parents' grief." Etc.etc.
And all the while they still do grieve, unallowed, they did 'know' their twin with all their existence, physically and emotionally, if not consciously, they are not happy to be alive and they know their parents are worried over them. Tough load for a five-year old, a twelve-year old, a fifteen-year old, a twenty-one-year old.
And there never seems to be an answer. Why me? Why not you?

The co-twin may have been too weak, growth retarded, genetically impaired. There may have been a cord accident, a faulty inserted cord or misplaced placenta. Things that also happen in singleton pregnancies and cause the demise of an unborn child. The moment life is there, the possibility of death also is. We know that, but it isn't an answer.

Naming a medical reason only shifts the WHY. Why didn't I have a cord accident? Why wasn't I a breech? Why were my chromosomes normal?
The drum beats on and on. Softer some days, harsher or even earsplitting and heartbreaking other times. Why me-why not you-why you-why not me...

We try to stifle them. We tell ourselves our twins wouldn't want us to suffer.
Of course they wouldn't. But they're not here. Because of that gigantic WHY.
Our twins are better off. A priest once said that to me. I firmly believe it's true, but it's not an answer. Not to THE WHY.
We will understand it all when we are finally reunited in heaven.
I firmly believe that, too, but not all survivors do, and the drum harasses them on.

Personally I try to see the drum of survivor's guilt as a constant reminder that my twin lived.
If I feel guilty about what happened or may have happened in the womb, if I feel it so strongly that it effects my everyday life even decades after it happened, than it's because something actually did happen. That drum roll doesn't come from nothing. It's an echo of my twin's heartbeat. S/He did have a heartbeat. S/He existed. Take that survivor's guilt! The drum doesn't spell doom, it spells fact. The only answer I can and will hurl at THE WHY is: S/HE LIVED. And his/her heart beats on in my life.
So if I feel survivor's guilt, it doesn't mean I'm less. Less worthy of living. Less capable to deal with things. Less deserving of good things in life. It actually means I'm more. More than my feelings tell me. I'm a twin who lost her co-twin. I'm me. I'm a survivor. I'm the one who felt you, heard your heart beating (unborn babies DO hear things), lived with you.

Survivor's guilt doesn't mean your guilty, it means you're a survivor. And you can only be a suvivor if there was something to survive. A terrible tragedy, even if nobody realised. Your twin's death. Because there as a twin. Because you are a twin. For always.

Friday, October 5, 2018

Twin substitutes and the art of making life complicated for me and others

From the diary of a twin substitute:

1.10. I told x I really like her. She beamed at me and seemed so happy. It felt good, I'm glad to be her friend.
3.10. Had coffee with x. We talked a lot. It was nice.
8.10. X seems to be mad at me. I have no idea why.


From the diary of a twinless twin.

1.10. Y has told me he likes me. I'm so happy. It feels like I have my twin back.
3.10. I really feel connected to Y. Like he was my twin. I feel I can tell him anything.
5.10. Y hasn't whatsapped me in 36 hours. I feel he doesn't like me anymore.
6.10. I feel so abandonned. Y has seen my messages but didn't reply. It's like losing my twin all over again.
8.10. Saw Y shortly downtown but couldn't talk much, I hurt so.

I was introduced to the term Twin Substitute through Dr. Barbara Klein's "Alone in the Mirror". Many twinless twins do this, look for a twin substitute. There are even some wo succeed, who find a person who is not a twin but happy to try and play the part. It's rare but not unheard of and there are people who win the lottery, too.

Most of us fail, and for early loss twins it's especially hard because we mostly don't know what is even going on. We just notice we are really, really, REALLY bad at relationships. People tend to distance themsleves from us after an initial time of seemingly entering into a close friendship, we are misunderstood or misinterpreted. As small kids we are labelled "over demanding" or "fussy" or "attention seeking". Parents and teachers think they need to teach us "it's not about us all the time."
I have a sneaking presumption that most kids who are called "over demanding" at age 3,4 or 5 and older are really wombtwin survivors. Only nobody knows, not even the kids themselves.

Those kids are never content. They demand constant attention from an adult. They over-share, try to sit next to a teacher, overflow with talk, hord toys but still want new ones, develop intense interests in changing subjects and want to talk about them. They generally wreck their parents' and teacher's nerves and specialists will tell these parents and teachers that the child "has to learn not everything is about him/her".
Well, it isn't. It's about the twin.

Those children grew in the womb with a constant presence. Everything they experienced was shared, and there was much. The first hiccup! Can you imagine what a sensation the first hiccup is? And your twin noticed the slight disturbance in the amniotic fluid! Look at this! I'm hiccuping! Here it goes again!!!
Everything that happened happened shared.
And then this kid is born alone. Sharing is still natural but now there is nobody close enough to share things with immediately. When I was about four family legend has it that I was staying at my grandmother's and as usual would trot in her wake through the house and comment on everything I saw or heard or felt. Suddenly I stopped and exclaimed:"You have to say something, too, Oma. I don't want to do all the talking by myself."
Isn't that cute?
It isn't. It's desperate. I needed the presence of my twin to share things with effortlessly and Grandma wouldn't play the part. She'd be occupied with things SHE didn't share with ME. She had her own world - preparing lunch, most likely-  and though she loved me and liked to have me with her, she didn't share her existence with me. Her breathing, her moving around, the grumbling in her stomach, her need to go to the restroom soon...
I did. I shared all these details, but then I was a four-year-old and a talkative one. My parents thought I was unusually advanced for my age and needed more challenges,
Actually I was looking for a twin substitute.
For a while I found the perfect one. A rainbow-coloured toy brush.
I took it with me everywhere, called it my "doggy" and talked to it. My parents were worried and releaved when "the phase" wore out.

In later life, whenever I attempted to find a friend, my idea of friendship was to be connected 24/7, to talk to each other every day at least once and to share everything. Thoughts, feelings and things,
Needless to say none of these attempts at finding friends ever ammounted to much. People found me weird, clingy, "overly present" and - hello, old friend! - "over demanding".
I took me decades to find out what was going wrong. I was treating them as twin substitutes.
Few non-twins can stand that.

As long as I didn't know I was a twin I was just trying to recreate my twinship unconsciously and frightening people off very effectively.
After I knew I was  a twin I tried to concentrate on recreating my twinship by finding out as much about my real twin as I could. I thought the problem of twin substitutes would be solved that way.
It wasn't.
Lately I discovered while I'm trying to recreate the good things about twinship by symbolizing my twin through names, pictures, songs and poems I'm shifting all the bad things on the poor twin subtitutes. They are the ones who abandon me. They are the ones who stop talking to me (to stop talking to a twinless twin is a powerful thing to do. When the deceased twin stopped responding in the womb, reality as I knew it crashed around and inside me). They are the ones who have to bear all the loss and the pain and the despair of my twinloss. And they don't have the faintest idea what's going on at all (see diary entry above).

I know this by now, but I still don't know how to handle it.
If a twin substitute doesn't reply to my Whatsapp, my world ends. I literally feel the ground shake beneath my feet. My existence is questioned (Yes, it IS!) and I feel a physical pain in my chest and stomach. It destroys me.
Like it destroyed my twin and thus the precursor of identity I had in the womb.
The presence of my twin is not something I long for, I want to have back or I'd feel better with, it's as necessary for my existence as the air I breath, as water and food.
But there are terribly many people in this world who have to go without as much water and food as they need. The fact that I need something doesn't mean I'll get it.

For the sake of any budding friendship I may still be granted in this life and for the sake of those poor souls I choose for twin substitutes I have to find a way to control my desperate need to share every breath with my twin (substitute), hear from him/her daily, feel the connection 24/7.
I just don't know yet how to do this.

Wednesday, May 16, 2018

This much I know to be true...

Some years ago I came upon an entry in a forum about early twin loss. A member told how she went to a meeting and one of the attending guys said "other than you I know for sure I had a twin sisterr. She died at our birth." The author of the post wrote how she reacted. "I also know it for sure."
Still, all her surety came from family constellation and kinesiology, and I can name more people than I have fingers and toes who would NOT call that "knowing for sure".
There is a fair number of things we early loss twins can do to gain confirmation that our twins really existed and I did most of them.

1. Medical confirmation. Blessed are those who were conceived after the advent of ultrasound, they will have pictures of their twins. Not very clear pictures. Possibly only two black spots on a grey surface, but pictures all the same. If your mother remembers details about her pregnancy and delivery, more may surface. Bleeding through the pregnancy. Talk of two possible heartbeats. Unusual gain of weight. Heavy or early child movement. An unusually big placenta. Tissue in the womb. Signs on the placenta that point to anther umbilical cord originally attached to it. An actual fetus papyracaeus. There are differing opinions as to whether dermoid cysts or teratomas refer to a vanished twin or are rather pluripotent cells going haywire early on. Double organs like four kidneys or organs of both sexes in one individual. More than five toes or fingers. Obvious chimerism. Chimerism proven through DNA tests. A fetu in fetu (a fully developed embryo found in a live individual).

2. Emotional confirmation. When Althea Hayton started her Wombtwin Suvivor project she developed a questionnaire that listed several emotional  traits supposed to point towards in utero twin loss. Among them are ovious ones - buying two of things, being unable to be alone, being averse to people approaching from one side - and less obvious ones - feeling alone in a crowd, looking for something without knowing what it might be, yearning for a soulmate - things everyone may experience once or often in live. Emotional residues of in utero twin loss may be immensely powerful but it's difficult to apply them to twin loss directly. They may also point to other traumatic experiences like being separated from the mother shortly after birth for a stay in the NICU, or traumatic events in early childhood.

3. Spiritual confirmation. Many early loss twins set great store by that. Do kinesiological muscle test. Meet a psychic. Family constellation. Hypnosis. Ask a pendulum or a crystal ball. There is literally no limit to spiritual technics. Like with emotional confirmation there are other suspects present which can not always be clearly distinguished from a lost twin. Earlier reincarnations. Trauma transferred over generations. Twin-flames rather than an actual twin... Depending on the spiritual healer's preferations there is literally no limit to possible explanations, which can be frustrating if you just wanted to have your twin confirmed.

Like I said, I did most of those. I pressed my mother for the last drop of information. Like a lemon. She tried to produce as much as possible but given the complicated nature of our relationship I can't even be sure if she didn't produce memories just to satisfy my expectations. Fact is, I was her first child and much has happened since.
She suffered from nausea for most of the pregnancy. Only in month 8 did she start to feel better.
(A twin pregnancy produces much more HCG, the hormone suspected to cause pregnancy sickness).
There was talk of two heartbeats at some time (no ultrasound in 1963).
She "lost a lump" on the toilet in winter 1963, thought "that looks like a tiny arm" and flushed the toilet.
She was hospitalised in March 1963 for suspected preecclampsia, but doesn't remember much of that. When she was discharged her cervix was partly opened and she was told to take it easy but not ordered to bed-rest.
She had very heavy child movement. 
I took 38 hours to be delivered.
The placenta was so huge the midwife said it "would have suited two".
She had to go back to hospital to have a D&C shortly after delivery.
I was a difficult child hard to comfort.

I never really bonded with anyone, not even - or least of all - my mother.
I resented touch from an early age on, before I could walk.
I never knew how to play with other children.
I chose objects to talk to ( a hand broom, later toys).
When my younger sister was born - I was 3 - I said "I don't want her, I want another brother." I had a brother 14 months younger than me.
I talked to someone nobody could see, but it wasn't an imaginary friend.
I often said "we" when I talked about myself.
I was - and am - in striking dissociation with my own body. I sometimes don't know where my arms and legs are.
I never had friends but was always in dialogue with someone invisible.
I learned to read very early (age 5) and prefered books about brothers.
I wrote stories about brothers.
A did a striking water-clour drawing at age 4 or five of two identical girls rope skipping. One has both feet in the air, her features are slightly blurred and she is laughing fit to burst. The other one has one foot on the ground. Her expression is more sober and her features are more clear. Her skirt has black stripes which make it look more grounded.
As a young child I used to dream I was somewhere I was not supposed to be and had to look for a way out. I always feel I'm in the wrong place or just plain wrong.
I never developed trust in life.
I have flash-backs which point to an in utero trauma like cord entangling or being in the same amniotic fluid with a mazerating dead fetus.
...

My mother asked a psychic who told her I had had a twin sister with whom I was still very closely bonded.
Another psychic told me I did not have a twin, but was a reincarnated witch from the middle ages.
Another psychic told me I had had a twin sister who was long gone.
A kinesiologist told me I had had a twin sister and a twin brother. Triplets.
I once had a very weird dream about me and another one sitting on a window shelf and tumbling down to different directions, I to safety, my twin to death. I woke up with a piercing headache, fell asleep again and had exactly the same dream again. This happened only once in my life (so far).
I always had the feeling of a presence with me I talked to. When I became a Christian, I thought "it must be Jesus or my Guardian Angel" and I was sincerely frustrated when this thought didn't satisfie me at all.

And that's it. I have tried for several years to find out more, but there is a limit to accessible information. I have begun to accept I will not find out more by going through everything I know again and again.

This much I know to be true, and confirmation will not come from the outside. Neither my mother nor assorted psychics will provide the kind of confirmation I so long to receive. Confirmation can only come from the one person who was there:I  myself. My body, my senses, my soul - they are the sources I can turn to again and again and will gain - step by step - more information about what I already know: I had a twin who died before birth.

Sunday, April 8, 2018

WhatsApp in utero!

Imagine one of my daughters said to me "I can't find my key!" I would start looking for her key. I wold turn cushions, crawl under chairs and tables, shake up jackets and bags looking for her key. All to no avail.
Then suddenly my daughter says "oh, by the way, it's not a key exactly. It's my chip-card for the garage at work."
So, in a way it's a key, because it opens doors, but actually it's a plastic card. No wonder I didn't find it. All the time I had the image of a metal bar with a zig-zag pattern in mind. There is no way how I could have found my daughter's key with this mental image as a pattern for the search.
Now I can turn a book and find the card lying beneath.

We can't search for something without an idea of what we are looking for.

I was always searching. For what I didn't know. The adults had many ideas. They thought I was looking for attention. For challenges. For friends. For an identity. For roots. For safety. For a family.
All those were things I lacked to one amount or the other in my life and I thought that's what I was looking for a long time, too.
Until I received attention and my search wasn't over.
Until I had a family of my own and still felt lost.
Until I had met challenges and still wasn't satisfied.
Until I had found a person who called himself my friend and I realised I was longing for a message by him...
...and when I received it the longing wasn't over.

When I found out I probably had a twin who died before birth, I - and many others - said "well, that explains a lot." It's my twin I'm looking for.
I had an idea of what it means to be a twin. I read books. I talked to other twins and twinless twins. I was sure I was looking for someone I'd be connected with, in sync with, who looked like me, whom I felt in tune with, somehow...

Ah, the others said, you're looking for a soulmate. Well, don't we all!

It took me some years to be sure that I don't. Actually it took me until the advent of WhatsApp in my life to realise what I'm looking for.

There's nothing more similar to life in utero with a twin than WhatsApp. I send a picture. An emoji. A single word. I just reach out and signal "hey, there! I'm using WhatsApp!" And all I receive and all I NEED is a thumbs up back, another emoji, a smiley. I send an impuls, I get an impuls back. Twin existence in the womb.

I realised I'm not looking for chats, pranks, adventures shared. I see my children having these with their friends and I envy them that, but it's not what I long for. I'm anxiety-ridden when it comes to social interaction and, frankly speaking, a soul mate to have long and intimate talks with would make me crazy within a very short time. The burning hole inside my existence which is shaped exactly like the thing I need and miss and look for - it tells me what it was: an unspoken, non-verbal, un-questioned existence next to another one. No exchange of words and ideas, not much physical contact - my twin very probably died before there was much of that - but the constant presence of someone. Not even always comforting, it may be annoying, too, like a pebble in my shoes.

When we know what we are looking for we know what we are missing. Not the other way round. And we can't EVER look for something we don't know.

Friday, January 19, 2018

Books on twinloss N° 13 "One" by Sarah Crossan

"One", published in 2015 has been heaped with praise, and rightly so. Sarah Crossan presents the story of conjoined twins Tippi and Grace in freely flowing verse, so it doesn't really unfold but pops into the reader's face and heart directly from the twins' life.

Tippi and Grace ( named after Hitchcock film actresses) are sixteen and literally joined at the hip. They are ischiopagus tripus conjoined twins, two heads, upper torsos, four arms and one abdomen and two legs. The physiological phenomena to a certain degree resemble those of conjoined twins Abby and Britanny Hensel, in any way Crossan must have done tons of research and she did them thoroughly. Tippi and Grace present the everyday routines of conjoined life in sentences as broken as they seem in "normal" peoples' eyes and yet adding up to a whole existence. Of two people.
The twins have to go to school. They used to be homeschooled but money has run out. As young children, unusual and cute, they would have got donations, but as teenagers those have dried up, their father has lost his job, their younger sister has to have a job to pay for her ballett lessons, their mother works extra hours at the bank and if it wasn't for grandmother the family would totally fall apart. Conjoined twins are an expensive asset health insurances aren't too keen on.
Crossan doesn't spare her readers a single detail but doesn't string them up neatly on a story line but lets them fall from her hand or throws them or accidentally drops them. So we learn about how it goes at school, about the actual and also very unusual friends the twins make, Yasmeen and Jon, how they cook, how they shower, how they are sick, how they soldier on, how their family tries to function, how they live.
Tippi and Grace are one but two. They are two persons but forced into one body, one life, one fate.
They know all the time that if one should die, so would the other.
The story is told by Grace and while Tippi seems to be the twin who lives every moment to its fullest, it is Grace who will have a future, for this is a story about twin loss, too.

The health condition that eventually threatens this one life in two starts with Grace collapsing and later Tippi, too. It's Grace's heart that fails and since their metabolism is effectively one, Tippi's heart works for the two of them and consequently soon will fail, too. The only chance to save, maybe, both girls, but at least one, is surgical separation.
Conjoined twins are normally separated in infancy. Not only is a separation at age 16 difficult and dangerous, it also poses much more of a challenge on the identity of the girls. Not only their parents, THEY have to take the decision. Grace needs a heart transplant but isn't elligible for organ transplantation while conjoined, anyway, doing a heart operation on their conjoined body is an incalculable risk. It's separation or death for both girls.
Again Crossan spills the details in verse at us. Where does the additional skin come from when conjoined twins are separated? You'll learn, dear reader, you'll learn.

Grace tells the story, so the outcome is kind of predictable. "One" is a special book. About twin loss and about twin life. An encouraging book. An inspiring book. A book that if read by a twinless twin may invoke heartbreak and crumbling existence all over again, but then the book is already broken und crumbling with its short chapters in tumbling verses and broken lines, and they add up to a poetic entity, one life, two persons, one love.
Highly recommended.

Friday, December 1, 2017

Vanishing twins don't 'vanish'!

The term 'Vanishing Twin Syndrome' (VTS) has gained some popularity over the past ten years. According to Wikipedia it describes "...a fetus in a multi-gestation pregnancy which dies in utero and is then partially or completely reabsorbed. In some instances, the dead twin will be compressed into a flattened, parchment-like state known as fetus papyraceus.

Nice and clean, isn't it? The fetus dies and then is reabsorbed. Or if that doesn't happen, it will be compressed and flattened. Like flowers picked and pressed in a book. Lovely.

Only that's not what happens inside the womb. That's what happens in bits and bytes and on a keyboard.

At least wikipedia mentions that the fetus dies. It dies the same way every human dies. The heart stops beating, blood stops flowing, cells stop growing. Limbs stop moving, eyelids stop opening and closing, fingers stop flexing, toes stop wriggling, lips stop sucking. All these movements are common in a fetus between 8 and 12 weeks, the first three, of course, before. All these things also happen exactly the same way if it is not a vanishing twin but a vanishing singleton. A miscarriage. Because singletons also may vanish within the first trimesters without the mother noticing anything. It's called a "missed abortion" then and unlike in cases of VTS it's mostly treated by a curettage, an abrasion of the uterus. 

When there is a living twin fetus, nature is left to deal with the dead body so as not to risk the other baby. The idea of a corpse in the womb is, of course, unsettling and there are postings to be found in internet forums about pregnancy that warn of poisoning caused by a "rotting corpse" in the womb.
There is a slight risk for the mother and remaining child, but to rot in the full meaning a dead body needs oxygen which isn't present in the womb. 

So the dead twin doesn't rot, it mazerates.

We all know mazerating. We mostly don't know that we know it. Take a hot bath for a reeeally long time. Maybe with a good book and a glass of wine. After about 90 minutes - in my humble experience the necessary time for a good bath - your skin will be slightly swollen, look crumbled and maybe even flakes will come off. That is the uppermost layer of your epidermis, easily scrubbed off with a sponge or pumice.
That's mazerating. The very first step of it. If you stay even longer in the warm water (like John Lennon used to do), your skin will further deteriorate, and if you happen to be a dead fetus in the womb, your skin will finally drift off your body and float in the amniotic fluid.

Depending on the type of twin pregnancy the surviving fetus witnesses this process more or less directly. In a fraternal twin pregnancy the babies may be located within a distance in the womb. That doesn't mean they don't notice each other. Since they are both connected with the maternal organism, the MOTHER, through their umbilical cords and placentae, they, by proxy, witness what happens to the other. The death of one fetus causes a difference in the mother's metabolism. The placenta stops working, blood stops flowing. All these occurences are passed on, albeit diminished, to the surviving fetus. The difference is notable.

If the twins are monochorionic-diamniotic like many identical twins, or if they are dichorionic like some identical and all fraternals, but positioned very close to one another in the womb, they witness their co-twin's death in more detail.They notice the movement stopping, maybe notice that the heartbeat and blood flow stops - these things don't happen in complete silence - in addition to the effects on the mother's metabolism.All in all, for all these twins something changes from normal - movement, sensations, noises made by the co-twin - to absolutely unnormal. 

The most severe effects are felt by the fetus in a monochorionic-monoamniotic pregnancy. This, rare, type of twin-pregnancy is also the most risky. There is still an estimated 50% risk of one or both babies dying before birth in a, so called, MoMo-pregnancy. With two umbilical cords floating in the amnion, entangling, twisting around limbs, the possibility of one or both of them knotting or wraping round one of the babies is always present. Cord accidents are a much feared cause of fetal demise (medicine lingo for a baby dying before birth) in singleton pregnancies, too, in a MoMo-pregnancy they're almost to be expected.

Being with another one in the same amniotic sac is the closest a human being can get to another one. The twins feel each other earlier than other types of twins. Through all the weeks when their bodies develop and their brains accordingly - for every sensation felt, every movement made fires some input into the developing brain and causes new synapses to be built - there is not a single moment when this is not their one and only and the only normal way to exist: in contact with one another. Impuls followed by re-action. I kick you, you kick me. It all belongs together. In a MoMo-pregnancy being in close contact with another one, feeling another one's movements, presence, limbs and skin is the only way of existing the growing fetus is exposed to. This is its normal. This is the only way of existence its brain acknowledges as normal. This is it.

There is, of course, no way to interview a fetus in utero about its experiences, but it is a well known phenomenon among mothers that very young children - and not so young ones, too - have difficulty do distinguish between themselves and what they feel. To realise that me feeling, a thing felt and the feeling itself are three different things is a highly advanced stage of human development. Thus a young child will just cry when it hurts somewhere and not be able to point to his head or tummy for approximately two or three years after birth. It's very likely that a fetus in utero if it experiences anything at all - and we know it does, we have, fortunately, sound scientific proof of that (google Alessandra Piontelli!) - resembles the young child rather than the grown person. What the baby feels it is. The twin baby in close contact with the co-twin IS the two of them. 

When a fetus in a MoMo-pregnancy dies, the surviving twin witnesses directly what happens to the co-twin. Unfortunately, as stated in the title of this entry, the co-twin does not vanish, it mazerates. Its skin comes off in flakes, they touch the co-twin's skin, its lips, it may even swallow them by accident. 
After the skin came off, the organs will fill with liquid, swell and then dissolve. Some of them may get caught in the co-twin's moving limbs. Sounds like a zombie-film? What may it feel like to the baby?!
The skeleton is last to disintegrate. If the pregnancy was advanced into the second or even third trimester, the skeleton may be too hard, already, to completely dissolve and the bones, maybe also some tissue, will form something like a lump in the womb. It will sink to the bottom of the amniotic sac but depending on the mother's movements may also drift up again and touch the surviving twin fetus. 
Not nice. Not clean and easy and certainly not as harmless as "vanishing" indicates. 
Such remains of a "vanished" twin may be found at birth but up to the 1980s doctors and midwives most certainly wouldn't mention it to the mother. They may have expressed the need to to an additional curettage to "clear out the womb" without going into further detail. Nobody will know there ever was a twin.
Nobody but the survivor.
To be in close contact with these weird things emerging from the sudden unnormality certainly overwhelmes the fetus in its abilities to compensate. These moving things create an unexpected and unpleasant sensation in its body. What is this slimy thing clinging to my feet? Why AM I a slimy thing clinging to my feet? What is wrong? Why AM I wrong?

Neurologists track the perception of one's own body back to the time in the womb. Whether a person feels okay with his/her own body is largely due to how they are treated as babies and toddlers by their parents but part of it may origin from experiences in the womb. For when the brain forms, it takes what is given to it as input and info from its environment in utero. The death and mazeration of a co-twin is a totally different experience than a corpse-free pregnancy. It would be highly surprising if these experiences were NOT stored in those parts of the fetal brain which are very active even before birth. Especially the amygdala, the part of the brain that deals with feelings and fears, has been noted to be even more active before birth than after. 

It should be clear from this scenario that a vanishing twin pregnancy MAY result in a severely traumatised newborn infant. 

It is not a necessary outcome. The capacity of the individual to deal with trauma is different even in a fetus. Chance may favour one child more than the other and provide less traumatic experience. Beside the type of pregnacy the emotional situation of the mother, her diet, even the family history, the political situation the family lives in - war or peace - all this may contribute to the way a fetus copes with the death of a co-twin. 
But one thing should be kept in mind by all who have to deal with the possibility or certainty of a person, be it themselves, parents, relatives or friends, subject to VTS -whatwever a vanishing twin does, it doesn't just vanish.



For those who want to check the information given in this entry - I learned the details of what happens when a fetus mazerates from several handbooks for midwives and medical articles on the internet. There are pictures, too. They aren't pretty.
For the development of a fetus in utero and its capacity to experience and react we will be forever indepted to Alessandra Piontelli who did the first long-term ultrasound study in the 1990s. She covered the development of several children, twins among them, from the 8th week of the pregnancy to four years of age. Her books are amazing.
For some pictures of miscarried children to illustrate how these tiny individuals living through this apocalypse may look, go to https://lostinnocentsblog.wordpress.com/photographs/. A very informative site done with love and care unsurpassable.
For the description of how it MAY feel to be in close proximity of a dead co-twin the work of Luc Nicon, French psychotherapist, is of immense value. Early loss surviving twins might benefit greatly from a look at one of his books.

We survived the zombie-apocalypse. And live to tell the tale. 

And don't forget. Before it became a "zombie", it was our twin. Before that upside down we were thrown into there was our normal, our natural exchange with our twins in utero, our feeling each other, our being together, our being t(w)ogether.- 
Our brains and bodies stored that, too.