This webinar contains sensitive content
Twin loss is a very difficult topic to speak about, and can often be seen as a taboo topic. In this webinar, we will open respectful, honest conversations about twin loss. We invited parents, doctors and organizations together to open conversations about twin loss.
Content warning. This contains topics that some viewers may find sensitive and upsetting. Our intent is to inform and educate, but also open conversations that are difficult to have ordinarily between doctors and patients. We advise viewer discretion, and please ensure you have local support networks available to you (we have also provided a list of resources below).
Topics
Loss during pregnancy, during delivery, and after birth. What can be done to support parents and the surviving twin? How can friends and family help? How can health professionals help?
What should happen in relation to screening after one baby passes?
What happens at birth?
An honest, unbiased discussion about selective reduction.
Support and advice for families and medical professionals in relation to talking about twin loss.
Part 1
Part 2
Expert Panel
Monique Duijvestijn
Monique Duijvestijn is one of the social workers in LUMC who works with the fetal therapy team.
The social workers are there for (expectant) parents in the often uncertain period, in which you are sometimes faced with difficult, life-defining choices.
Dr. Joanne Verweij
Joanne is part of the Fetal Therapy Team at the LUMC in Leiden. She is an obstetrician and fetal therapist. Her aim is to improve outcomes for complicated monochorionic twins and their families. She has a special interest in perinatal ethics, with her research focusing on fetal therapy and extreme prematurity.
Dr. Jeanine van Klink
Jeanine is a child psychologist and researcher. Her research focuses on the long-term outcomes for identical twins, especially those affected by complications in utero. She leads the research into the long-term effects of TAPS at the LUMC.
Patient Journey – The Story of Zoey and Alice
Helen Webb
Helen is a mom of 5, living in Oklahoma, and is an active member of our community. Her story starts like this: One day you’re blissfully pregnant, expecting to be told everything is going fine we’ll see you in two weeks. The next being told we suspect it’s sudden TTTS and you need to go see a specialist 8 hours away, like tonight! The stress alone not even knowing much about TTTS was hard, but then to hear a smidge about TAPS was harder. ..
Part 4
Featuring
Twins Trust Bereavement Support Group
The Twins Trust Bereavement Support Group (BSG) exists to support all parents and carers of twins, triplets or more who have died whether it was during pregnancy or after pregnancy.
The Skye High Foundation
The Skye High Foundation was set up to help families dealing with the loss of a baby who was part of multiple births. They created the purple butterfly cot card, which is placed in an incubator or cot in memory of their sibling.
The Neonatal Butterfly Project
The Neonatal Butterfly Project is a website designed to help healthcare professionals and care providers understand the unique needs of parents who lose a baby in a multiple pregnancy.
They recently launched a world-first course: Loss of a Baby in Multiple Pregnancy: Supporting Grieving Parents together with the Skye High Foundation, giving a deeper understanding of what parents go through in relation to twin loss.
Twin Loss Resources:
For Professionals
The Neonatal Butterfly Project
Patients
Centre for Loss in Multiple Birth (CLIMB), Inc
Twins Trust Bereavement Support
Twin to Twin Transfusion Australia, Inc
Downloads courtesy of the Skye High Foundation.
Facebook Groups
TTTS Survivors with a Guardian Angel
Books
Toughest, Teeniest Twin Soldiers: Living and Dying Through TTTS (adult)
Sunshine after the Storm (adult)
TAPS Support would like to extend a thank you to the following people who donated their time to our webinar and helped with resources: Millie Cann (Skye High Foundation), Sharon Darke (Twins Trust Bereavement Support), and Prof. Nick Embleton (Neonatal Butterfly Project) and the incredible work they do within the twin loss community.
Please reach out to us for more help and information.
