I am a 49 year old womb twin survivor. My twin died in utero about 6 weeks before me. My mother didn’t know that she was carrying twins; 1970 no sonograms. I always knew about this, I was told when I was very young, and I never gave it much thought. Now I know that it has ruined my life, and I wish that there were doctors or specialists in NY who specialize in how this affects the surviving twin. I could say more about how hard it was for my parents to raise me. To sum it up, I was already ruined before I was born, and it affected my neurology, in my opinion, because shortly after learning about womb twin survivor studies across the pond, I was diagnosed with Apsergers, now ASD. At least today people have more knowledge and are learning about the impact and treatment for the surviving twin.
@Bettina furthermore, I wish that doctors and health insurance providers and the government would recognize the disability of adults with ASD. What do people think, that autism just goes away when you reach age 18? Also, why isn’t there a single doctor or psychologist in the tri-state area that is even educated in the study of womb twin survivors? I was misdiagnosed with a borderline personality disorder for years, but next to that diagnosis was always a comment of an unrecognized disorder. I really need the world to be aware and if anyone who reads this has any advice, please share
@Bettina I am the mother of a twin less twin. They were born 3 months premature. His brother died the day after they were born. My survivor was eventually diagnosed with Aspergers. I didn’t know how to respond to his sense of loss and aloneness growing up. I am sorry for you both, but you are not ruined. I’m sure you’re as special to your parents as my son is to me. God bless you.
I am a twinless twin. I am 32 years old. My twin Nikki and I were born on the the 9th July 1987. We were 24 weeks old. We were not expected to survive. My sister lived for 19hrs only.
My entire life knew about her, she was not I mystery. I went to a school that had 2 other sets of identical twins and it always hurt so much. It was like a kick in the guts and i neber ever felt complete as a person.
I miss my twin, bit I'm sure she has saved me over my life with certain events and i am sure I saw her when I was 18.
I would love to get into contact with this girl in the article please to see if she feels the same or has experienced things also.
I am raising a twinless twin who is 10 years old. Her sister died minutes before a 27-week delivery, of acute twin-to-twin transfusion syndrome. My survivor almost joined her sister many many times. She was in the NICU for 5 months, and her sister's death caused an injury to her kidney. She had a transplant at age 4. I was not able to grieve and heal properly for years, because I was so consumed by caring for my survivor. That said, we always spoke about it, since birth. My daughter knows about her sister, and sometimes wonder how life would be different had she survived. Ten years later, I wonder every day too.
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@MBH my daughter is 5 and her identical twin sister died at 11 weeks of age. She had a cystic hygroma that couldn’t be handled where I live. She actually died one day after she went home from NICU under
Supervision of a NICU nurse... it will remain a mystery why she died. My elder daughter was traumatized as she saw her sisters together for one day. She was only 4.5. My twinless twin started talking about her sister but I am always worried how strong it would affect her.
My daughters were born 9 weeks early. A week before their birth a sonogram showed misshapen kidneys in one. Our surviving daughter knew from the beginning she had a sister who died. Her older siblings and extended family talked openly and frequently about her. Initially I would catch a glimpse of her. At each major event we wondered and wished we were celebrating two. This article raised many questions as I read. I will feel grief and puzzlement all of my life.
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she writes with such grief after all that time passes. it never goes away? it always pains? that's strange to me, her grief for a moment of a promised life. we have all lost our hopes and loved ones. as a (dare say it) a real twinless twin who adored her identical sis for 48 years, I'm sorry for your loss and your daughters being without her twin. it just touches the surface of my pain. I keep it to myself because it never goes away and I am here, living a sad life without her.
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Thank you for a beautifully written piece. It is filled with love.
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“My perinatologist warned that if baby “B” died during the remaining months of my pregnancy, I would have to carry him to term to keep his sister alive. If he survived until the delivery, his inability to breathe on his own after birth would ultimately be the cause of his death.”
My goodness as the parent of twins this scenario is just utterly heartbreaking. I would cut the author some serious slack on how she (and her husband) dealt with it.
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Our first pregnancy ended in tragedy with the same diagnosis as her son. Post-urethral valve syndrome. It destroys the lungs and kidneys in utero. It is a sad and very difficult diagnosis. Fortunately I was pregnant again about a year later and delivered a healthy baby girl. Later a son arrived.
I understand everyone grieves differently but this mother’s grief was perhaps not completely dealt with. A surviving twin in such a circumstance would be unlikely to feel survivors guilt without the idea being planted somehow.
That said, it sounds like her daughter did fine and maybe grandma can find peace enjoying this new wee one.
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@Ladams8 I think a lot would depend on the capacity of the surviving child to process the information about her twin's death. It would have to be very carefully presented, taking into account her developmental stage and language comprehension.
Not every child is capable of this at any specific age. Not every mother is capable of coming up with the absolutely perfect words. Not every therapist is skillful enough to offer the perfect words to the parents.
The notion of any mother "planting" survivor's guilt in a child is cruel beyond measure.
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What a beautiful and touching essay you have given us. Retiring after 40 years of participating in the care of some of the most ill children, I had thought I had probably seen and experienced just about all of both the triumphs and tragedies of pediatric care. However, the personal family scenario of your own postnatal lost twin and your bravery, determination, and persistence in successfully dealing with all of it was educational and inspiring.
Thank you for continuing my pediatric medical education, and I wish you great joy as a grandparent.
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First, I'm sorry for the grief that she has suffered for so many years. It sounds awful.
That said, I'm concerned about the undue attention that she places on the whole twin thing, and the prioritization of her own experience over that of her (now adult) child. One wonders if she would have felt the same grief if a child from another pregnancy had died at birth. It is remarkably sad that the author's daughter had to worry about her mother's grief during the ultrasound for her own child.
I have twins. I have raised them as siblings. They are close but very different. That they are twins is a factor in their lives and in my parenting, but it is not even remotely dominant.
Honestly, this is strikes me as a story about the grief that some parents hold for having only one child, and the pressure that only children experience because of that. As parents, we should be very careful about off-loading that burden to our children.
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@Cousy I think you mistake openness about a grief with refusal to deal well with it. At the end, her daughter is close enough and trusting enough of her mother to be able to acknowledge what she must be feeling with love. Not everyone survives grief in the same way. That young woman was healthy and loving, which to me says her mother was a good and loving parent..
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The grief is life long.
In the days long before fertility treatments, my mom had two sets of twins (I am not one of them). The first set, identical twins, are alive and well. That's not the case with the second, fraternal, set.
The youngest of the second set developed Hodgkin's Lymphoma when he was 7. He died 10 days short of his 10th birthday. We celebrate birthdays with joy for my brother who lives on. For the one who passed, a quiet remembrance.
Death of a twin is hard. I think it's been hardest on my parents, and my brother who survived. When 100% became 50%, we were all changed.
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@Cousy I have lost a single baby and a twin. The emotions for the two are much the same but very different. You are fortunate to have not lived through this. Your comments show that you haven’t and show now empathy. Lucky for you.
“... the whole twin thing...” is rude, but I believe you don’t understand why because of your not living through a loss. Sometimes not saying anything is better.
I am a twinless twin. My twin also died very shortly after birth. My parents told me when I was about 12 years old, which seemed about right. By then I had had twelve years of being raised as a single child (with two much older siblings). And it honestly never occurred to me to feel guilt about something that was so plainly beyond my control, or to feel that my parents loved me less because of the circumstances of my birth. I sympathize deeply with the author. But to the extent her article advocates an early effort to bring the surviving twin into discussions of the parents’ feelings, my story may be a counter example. From my sample of one the data suggests that an equally valid course is to wait to tell the surviving twin until he or she has essentially experienced childhood as a single child. I realize this approach is somewhat at odds with the widely perceived imperative that all feelings must be shared and confronted at the first opportunity. But it worked for me. By the time my parents told me, the revelation was very moving and set off a lot of speculation about how different my life would have been had my twin survived. In a way I “miss” him to this day. (I’m pushing 60.) But I received the news in a context established by years of loving parenting. And if anything it intensified my bond with my parents.
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@Chris
I think it depends on how the parents' grief is affecting their functioning during the surviving child's earlier years. If a child is being parented by someone in distress, it's almost impossible to hide *that* from them, and usually better to be open, in a developmentally appropriate way, about the reason for the distress than to leave it to the child's imagination. Children imagine much worse things than reality sometimes! If the bereaved parents' functioning for their other kids really isn't affected, there's probably less risk to waiting to talk about it.
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@S A fair point. These decisions are difficult and case specific. Just figured it would be informative to add my experience to the discussion.
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I had a brother die before I was born. My mother spoke of him constantly. She never dealt with her grief. I finally exploded at her one day when I was in my teens. "You have four living children who love you, but all you can talk about is the one that's dead!" I screamed at her. I knew I had hurt her, but she had been hurting me for years. Our relationship was never a good one, and I eventually moved out and didn't see much of my mother for the rest of her life. Our whole family could have benefited from therapy. I'm sorry now that we didn't do that.
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Holding on to grief as a way to keep the deceased alive is not limited to a lost twin. Surviving siblings of any lost child deserve life to be about them. I am glad for the writer that she found the help she and her daughter needed.
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Beautifully written Marcia... This gave me a lot to think about from both, a mother's perspective, and the surviving twin's. My brother's wife also lost a twin right after birth, and it was heartbreaking. Your piece reminded me of different family gatherings this fact eould come up, and now, wonder how my (surviving twin) nephew felt about the ensuing conversations.
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This is so raw and touching. The story feels as though it just happened and I feel like I am present in all those moments. Thanks for opening up such a personal part of yourself not the world.
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Wonderful writing. So very glad you sought counseling. Love the ending.
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Thank you for sharing your story.
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Elvis was a winless twin. It caused him to be sensitive to his mother. There is probably much written about this relationship.
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As was Liberace... supposedly, he and EP bonded over this, as well as stagecraft.
Can you imagine two Elvises? Two Liberaces?
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