TWINLESS TWIN

katCampos_2016

“A twinless twin is a person who had a twin or multiple birth sibling(s) who has died. There are many causes for such losses and different issues facing each type of twin loss.” -Wikipedia

A twinless twin (surviving twin) who has lost a twin sibling before or shortly after birth due to miscarriage, vanishing twin syndrome, stillbirth, or due to medical complications may not have conscious memory of their twin but may sense something missing from their lives even if they were not informed they were indeed a twin. Many report feelings of grief and loneliness related to the loss of the twin and the absence of conscious memories. A twinless twin who has lost a twin as a child or adult experiences the same sense of loss as any sibling may experience, although the feelings may be intensified depending on the closeness experienced by the twins. A surviving twin may feel part of themselves is missing as well, whether the twins were fraternal, identical, same or opposite sex twins. “A vanishing twin, also known as fetal resorption, is a fetus in a multi-gestation pregnancy which dies in utero and is then partially or completely reabsorbed by the twin.”-Wikipedia

Kat: My family has always openly and actively acknowledged my twin brother Cruz, who died shortly after our birth. Cruz is my companion in life’s journeys, my spiritual advisor, ever present and beloved.

Kathy: (Kat’s Mom and blog partner): In the early 1980’s while participating in a Neurolinguistic Programming Intensive Training at Esalen Institute in Big Sur California a co-participant expressed the lifelong emotion he had experienced of feeling alone and lost in some vague but disturbing way. This very successful late 30-40 year old attorney wanted to explore this feeling further during the course. Through the hypnotherapy/neurolinguistics programming experience he recalled being in the womb with a twin. Back in the 80’s phone calls from Esalen required a wait in the parking lot to use a pay phone with a maximum time limit per user (and a line of people also waiting to use the phone). Following an anxious wait in a long line, the brave attorney nervously dialed his mother’s number and she answered, confirming her son had been born a twin, and the twin brother had died at birth. The family had never discussed the deceased twin with their surviving son. As training continued it was very clear that the confirmation and clarification of feelings the participant had experienced had provided the surviving twin with an opportunity for great healing and empowerment.

Are you a surviving twin, family member, friend or healthcare provider? Abundant cost- free empowerment tools are available on-line. Below is a small example of publications we found that may interest some of you!

1)Always My Twin: By Valerie R. Samuels Illustrator: Najah Clemmons 

A book for young children who have experienced the death of their twin sibling, and for any child whose twin died before birth, after birth or as a young child.

2)The Lone Twin: By Joan Woodward

Joan Woodward, an Attachment Therapist and founder of the Lone Twin Network, an organization that enables lone twins to contact each other and share their experiences. The book was revised in 2010 and may be a valuable resource for health care professionals, parents/caretakers, and surviving multiples alike!

3) “Psychology Today” posted 05/11/15:Vanishing Twin Syndrome: Your Intuition May Be Right – By Susan Heitler Ph.D.

Blog Link- https://www.psychologytoday.com/blog/resolution-not-conflict/201505/vanishing-twin-syndrome-your-intuition-may-be-right

“The in utero loss of a “vanishing twin” nonetheless can have profound emotional impacts on the surviving child, particularly when the loss occurs well into the pregnancy.” Dr. Heitler further states “Your intuitions well may be offering you clues to understanding yourself, and others, more deeply”.

4) Neonatal Research  -Following important research in neonatology / newborn medicine from around the world   https://neonatalresearch.org/2016/04/06/death-of-a-twin/

About Keith Barrington, Author: Keith J. Barrington is a neonatologist and clinical researcher at Sainte Justine University Health Center in Montréal. He is Professor of Paediatrics at the University of Montréal. He was formerly chair of the Society of Neonatologists of Québec.  His particular research interests are in cardiovascular support, in apnea and its treatment, in the ethics of decision making for high risk newborns, and in anything in clinical care that might affect outcomes. The 22 of May 2005 he had a very preterm baby girl at 24 weeks gestation, her hand is in the banner photograph on this blog, with his ring around her wrist. She is now in her fourth year of school.

 Death of a twin: Posted on 6 April 2016 by Keith Barrington

“Twins are much more likely to end up in the care of the NICU than singletons, and much more likely to be extremely preterm, and as a result the phenomenon of having one of twins die, while the other remains in our care, is not rare.

When I was younger, I used to think it was kind to stop referring to the surviving twin as ‘twin B’, and to remove reference to the deceased twin from the name card of the survivor. I think now that I was wrong, that we should recognize the deceased twin, and help the parents to cherish their memory without trying to erase them from the NICU.

Although I am often somewhat dismissive of qualitative research, which frequently makes excessive extrapolations from tiny data sets, there are some questions that require a qualitative approach. For example “what is the experience of mothers who have lost one of a pair of twins?”

This article from last year is a report of a quantitative study of 14 mothers who had lost one of a pair of twins, 5 antenatally and 9 after birth, in the NICU. (Richards J, et al. Mothers’ perspectives on the perinatal loss of a co-twin: a qualitative study. BMC Pregnancy & Childbirth. 2015;15(1):1-12. Open Access)

The message of the article is that, not surprisingly, this is a major life event which shakes mothers just like the death of a singleton, but that the health care providers can make a difference, sometimes with very minor effort on our part.

A good example of what NOT to say: ‘at least you’ve still got one’. And a mother’s response:

I know I’m really grateful I still have[surviving twin] but that’s like saying to someone that has a child of four and six and the six year old one dies, ‘well you’ve still got the other one, so that’s ok’.

An example of how profoundly the event can affect the family:

‘And [surviving twin’s birthday party] it’s a week after, it’s the Sunday after her birthday not at the weekend of her birthday because I couldn’t …I couldn’t em I just can’t, I just find her birthday a really difficult day’

One of the mothers reports that a nurse would often refer to the surviving twin using the wrong name, the name of the deceased baby. That is not a hard thing to avoid.

One message is that my old idea of removing the designation “twin B” from the surviving twins crib is something that we should discuss with the parents, ask them “do you want us to still keep that notation on the identification card, or not?”

There are many other good messages in the article, which as mentioned is open access. One of the less scientific parts of the manuscript, but the most helpful for clinical practice is a separate document ‘Recommendations for Best Practice’: A list of recommendations drawn from the data for health professionals, based upon the views and experiences of participants. Which you can also download freely from the BiomedCentral website, the link wasn’t immediately obvious to me, you have to scroll down to the end of the manuscript, but before the references to find the link. I copied the link and mapped it to the title above, which might work, but please go look at the article as well.

The recommendations are divided into sections, and I am not going to reproduce them all here, just a few highlights: Acknowledging Bereavement: It is important to mothers that health professionals fully acknowledge parental grief at the loss of a twin whilst simultaneously focusing upon the care of the survivor. Mothers value very highly health professionals who allow them time to talk about their loss and refer to the names of both their surviving and deceased twin. Trauma and Grief: Health professionals should recognize that the traumatic nature of their loss can impact upon mother’s ability to process information or make decisions in respect of the surviving baby. Information: Wherever possible, continuity of the care team is important for bereaved mothers. This provides ‘familiar faces’ for mothers with whom they build up relationships of trust during their time in hospital”.

And on another note   🎶

Teen Birth Rate, Multiple Births Reach a Historic Low – US News and World Report 12/23/15. This article reports that the number of women who gave birth to triplets, quadruplets or larger sets of babies declined again in 2014, showing a 40 percent decrease since their peak in 1998, according to data released Wednesday from the Centers for Disease Control and Prevention. The number indicates a decline in high-risk pregnancies associated with fertility treatments, though the number of twins born in 2014 increased slightly.

Dearest Warriors! Our NICU siblings are arriving in the USA at a current rate of 1 out of 9-10 births. The paths we create on our journeys to wholeness hold the potential to inspire, empower and provide options to those who follow.

surf_kat_baby

Author: Kathy Papac and Kathryn Campos

Kathryn (Kat) Campos: Hello, I am a former 24 week gestation NICU baby. I lost my twin brother Cruz at birth and encountered open heart surgery with no anesthesia at 3 weeks old weighing 1pound 3 ounces. I served on the University of Washington Medical Center Advisory Board Neonatal ICU Council from 2013 to 2015. I am passionate about assisting and supporting our Global NICU Community. If your a Preterm Birth/NICU survivor this blog is dedicated to you, your family, and all members of the NICU Community. Together lets support other NICU Grads, NICU babies, NICU families, NICU staff, and NICU facilities. We have stories to share and NICU journeys to help empower! Kathy Papac: NICU mom of surviving (Kathryn) and a deceased (Cruz) 24 week gestation twins. Neonatal Womb journeyer, counselor/legal expert with an MA certificate in Spirituality, Health and Medicine from Bastyr University. Passionate Global Community participant. Our goal is to recognize, honor and empower the Neonatal Womb community and shine light upon the presence and potentiality of the preterm birth survivors as vital community participants.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s