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When life and death run side by side; losing one of a set of twins.

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Coming up to 3 years ago, I lost one of my twins, my son Archie, 2 weeks before I gave birth to him and his healthy sister Ayla. He had a rare and severe genetic disorder and we knew from around 24 weeks of pregnancy that we would eventually lose him. The experience was like nothing I’d ever had to face before. A whirlwind of extreme and opposite emotions that seemed to suspend me temporarily from feeling anything else. 

Every parent who loses an infant, whether during pregnancy or shortly after, is thrust into a storm of emotions. Crippling grief, trauma, guilt, emptiness, anger, sadness. A feeling of being cheated and wondering why it happened to them. Why was it their baby that was taken? They will always wonder what their child would have been like, what life would have been like with them in it. Their friendships and relationships will be tested. They will probably experience extreme anxiety in any future pregnancies, and might feel a guilty envy towards happily pregnant women. No matter the situation in which a mother has lost her baby, it is awful in a profound way that changes you forever.

Losing one of a set of twins.

When you lose one of a set of twins, there is an added layer of complex emotions to process that is unique to our situation. Suddenly the grief you feel for your lost baby is running perilously side by side with the joy that your surviving baby brings. Indeed, the baby that died is often referred to as the sunset baby, and the healthy baby the sunrise baby. But it is unnatural for a sunrise and a sunset to happen at the same time. And so, you become two sides of the same world. A world that spins erratically on its axis, stirring up a tidal storm of epic proportions. Mother nature at her most powerful. 

Photo by Jonas Jacobsson on Unsplash

I asked a group of mothers who have lost one of a set of twins during pregnancy or as an infant, what are the main issues they have been confronted with. What is it they struggle with the most? Of course I myself have also gone through it. But I wanted to cast my net to catch an even wider range of understanding on the topic. As it turns out, in researching other peoples experiences I learned that we all face or have faced very similar emotional and mental journeys. No matter how or when we lost one of our twins, the same main points were repeatedly raised by each of us. 

It is a complicated bereavement, and often misunderstood. And so, this is our journey, what we want you to understand. What we face, as the parents of twinless twins. 

Anxiety over the pregnancy and surviving baby.

In circumstances where one baby dies during pregnancy and it is too early to deliver the survivor the mother must go on to carry both for the duration. This can be for quite some time if the baby passed away early on or mid way through. In these cases there is a constant feeling of concern for the survivor, particularly in the case of identical twins that share a placenta. Will the deceased baby have an adverse effect on the other one? Will that baby die too? Could the baby’s passing trigger early labour? From the parents point of view one of their babies has already been taken from them. So losing the other one is well within the realms of possibility. 

Not only that, the emotional impact on a mother of carrying around her dead baby is enormous. As one woman put it, “you become a womb and a tomb”, carrying both life and death within your body. Your once happy pregnancy has vanished. It becomes something more to endure than enjoy. You can’t breathe easily or sleep peacefully until your surviving twin is safely in your arms. 

No time to properly grieve.

Even healthy twin pregnancies are often delivered early, simply due to there being double the amount of baby to carry around. In the vast majority of situations where one has passed during the pregnancy, the survivor will spend some time in the NICU after birth due to prematurity or health issues.

Anyone who has had a baby in the NICU will know that it is an incredibly busy time. Seemingly endless days, weeks or even months spent at the hospital. Punctuated with exhaustion, worry for your baby and breast pumping. Then when you do leave the hospital you are faced with navigating all of the normal trials and tribulations of having a newborn. It’s a lot for any parent, in any circumstance. And among all of the chaos it is difficult to find the head space to deal with your loss. Sometimes the magnitude of it can seem like too much to cope with. It can, and often does, get pushed aside. 

But as with all unresolved trauma, it sits festering. If not dealt with can rear its ugly head further down the line in a myriad of ways that can be detrimental to both the parents and the healthy twin.

Grappling with extreme and opposite emotions. 

The unrivaled joy of bringing a new baby into the world, and the devastating agony of losing another. Beaming pride at watching your child grow, and extreme sadness at what your other will never become. Parents of identical twins report the beauty and heartbreak of seeing the child they lost in the face of their survivor. 

It is something that thankfully rarely presents itself, this confusing and overwhelming mix of emotions. But as such it can be a huge, muddy hurdle to drag yourself over when it does. Our human minds aren’t used to having two such extremely opposing thoughts going on at the same time. And when it occurs they seem to fight each other. They relentlessly wrestle for room in your head, and you never know which one’s going to win that day. 

For me a turning point came when I was writing my book “Growing”. The book follows me intimately on the journey of losing Archie, and being diagnosed with breast cancer shortly after. For some reason I can’t really pinpoint, perhaps from reading my own story as an outsider would, the extreme and opposite emotions stopped fighting. I suddenly understood and accepted that they can and will live side by side now. They made their peace, and I found mine. But getting to that point was a tumultuous journey.

Thoughtless comments from other people.

Every single one the parents I interviewed, myself included, has experienced hurtful comments from other people. Comments such as “it’s for the best”, “at least you still have one” and “be grateful you still have a baby”. I am sure that most people don’t mean to be insensitive. But if someone has 2 children and one of them dies, would you say “at least you have another one!”? Of course not, or at least I would hope not. It baffles me that people think that it is okay in the case of twins, especially when one was lost during pregnancy or just after birth. It invalidates not only the grief of the parents, but also the life of their baby.

When a mother has lost her baby, there is no ‘at least’. 

Another issue a lot of the parents I spoke to face is people not acknowledging the baby that died. I think this is generally the case in all kinds of infant loss. People are inherently uncomfortable facing it or frightened of upsetting you. But when the baby is one of a multiple it is easier to hide behind the survivor. To focus on the healthy happy baby. It’s so important to bear in mind that you won’t upset a mother by talking about her baby that died. You are not reminding her of it. Trust me, she has not forgotten. 

Parents are often encouraged to try to forget the dead sibling, to rejoice for the living twin, with the distraction of the living twin making it easier for family, friends and staff to ignore the twin who died.

But — and this is perhaps our most important lesson — we must all understand that the life of one twin does not eradicate grief for the sibling who died. There were as many dreams for the twin who passed away as for the twin who survived.

Dr Karen O’Brien

Celebrating milestones.

When parents are raising a child without their twin, they are reminded at every milestone of their other child. Every birthday, every big “first”, they feel the empty space where their other child should be. For me personally my twins’s first birthday was incredibly difficult. Feelings that I thought I had mastered some sort of tenuous control over resurfaced. I expect they will continue to do so throughout my life.

Myself and my partner are currently planning our wedding. Whilst browsing adorable flower girl dresses for Ayla, I often find my mind picturing our little page boy in his suit that matches Daddy’s. It’s always there. The internationally recognised symbol for the loss of one of a multiple is the purple butterfly. I incorporate one on my daughters birthday cake every year, and we will both be wearing one in our hair on the day of the wedding.

Photo by Bob Brewer on Unsplash

Fear of the psychological impact on the surviving child.

There are few clear studies on this exact type of bereavement. It is known that fraternal twins face about a 30% increased risk of psychiatric problems after the death of their twin. In identical twins the risk is even more profound at 2.5 times higher. These findings are from research done on older children who have suffered the death of their twin. 

It is of course a lot harder to know the impacts of an early loss during pregnancy or with very young babies. It is impossible to quantify the psychological and emotional connections that twins make in the womb, if any. A lot of parents report their child asking about their twin from a young age and exhibiting signs of sadness and confusion, but it is all anecdotal. 

All you can do as a parent of a twinless twin is keep in mind how you want to handle it. It can be hard to know what approach is best. Some parents feel it is wiser not to mention to the survivor about their twin. Myself and my partner have decided to always be open about Archie. Ayla will always be aware of his existence. We feel that normalizing it and having an open dialogue surrounding the subject, set at her pace, is the way to go. I am armed with this book and this one, to help introduce the conversation in a way that is gentle and relatable for children. 

Feelings of guilt over still having a baby.

I lost count of the number of times I sat cradling or feeding my precious newborn baby girl, and cried tears of heartbreak for the Mums who had endured a single loss and had no baby to love. The thought of their empty arms, their breasts full of milk and no baby to feed, floored me. 

I felt so unbelievably grateful to have my daughter in my arms, to love and to mother. But the problem with that is it leads to feelings of guilt. Thoughts that you somehow don’t deserve to grieve for your lost baby. That in acknowledging your lost baby you are somehow being ungrateful for your survivor. Those feelings only add to the suppression of the grief and prolong the bereavement process. 

I suppose it is very similar to the survivors’ guilt . A mental condition commonly experienced after battling cancer or other life threatening situation that others did not survive. 

Take-away.

Losing one of a set of twins is an experience that can be a minefield to navigate. It is complex and confusing. Overwhelming and all consuming. There are many facets to the bereavement process and it is often misunderstood and even brushed under the rug.

The main thing I know for sure the parents who have lost one of their twins wants the world to know is, one baby does not cancel out the other one.

Not in life, or in death.

If you are affected by any of the issues in this post, head over to SANDS for information and support.

One thought on “When life and death run side by side; losing one of a set of twins.

  1. This is absolutely a true representation of how us twinless twin mums feel. It’s like you’ve read every single thought I’ve ever had and recited it perfectly. Amazing. I thank you for having the strength and the voice to share this, and I hope it creates more awareness and understanding for the subject.

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