188: Twin to Twin Transfusion Syndrome and Loss of a Twin

October is Pregnancy and Infant Loss Awareness month. Mom & Mind honors all of the loss families who are grieving the loss of a child. There is no timeline and no right way to grieve, so we hold your loss with tenderness and love.

In this episode, Sarah Arcotta talks about the loss of one of her twins from Twin to Twin Transfusion Syndrome, a condition we haven’t yet covered on the show. Sarah shares the difficult grief from her experience and shares her healing and supportive message for other families. Sarah is an artist and educator who lives just north of Boston. You can find her exploring tide pools with her two young children or making art. She advocates for arts education while earning her Master’s degree in Leadership in Education. Sarah shares her story of loss, postpartum depression, and recovery to bring awareness to a serious condition affecting twin pregnancies.

Show Highlights:

How Sarah’s story begins 14 weeks into her second pregnancy, when she found out she was having identical twins

At 16 weeks, she was diagnosed with twin-to-twin transfusion syndrome (TTTS), which occurs in 10% of twin pregnancies

What is TTTS? It occurs when twins share the placenta but have separate amniotic sacs; one twin (recipient) receives too many nutrients due to the blood vessel formation, and the other (donor) doesn’t receive enough nutrients

How Sarah lived with fear and anxiety in every single moment, having twice-weekly ultrasounds to check the babies because of the unpredictability of TTTS

How Sarah was ill and uncomfortable during the pregnancy, having to have amniotic reduction, but the fluid came right back

At 22 weeks, Sarah had laser ablation surgery to try to correct the blood vessel placement

How the ultrasounds showed her recipient baby was receiving too much fluid, which put a strain on her heart

After making it to 28 weeks, an emergency C-section brought her daughters; the donor baby lived only 45 minutes, and the recipient baby went straight to NICU

How Sarah functioned in survival mode with a heightened sense of fear and anxiety every single minute

85 days later, her daughter was still in NICU, and her fear and anxiety remained

When her daughter finally came home, a tsunami of emotions hit Sarah, including rage and depression

How she felt out of control and tried to push down the rage; when she couldn’t, she turned to alcohol to try to deal with her emotions

How Sarah lost her father unexpectedly just a few days after the loss of her daughter and she didn’t feel like herself for about a year

How Sarah continues to integrate healing work into her family

How Sarah tries to use her experience to enrich her life better

How meditation, mindfulness, and creativity help Sarah to feel emotions and have compassion for herself

Hopeful messages from Sarah: “This is a very difficult, heartbreaking, and stressful experience, but it’s also something that will enrich and grow your life. It will inform who you are and the kind of family you raise. You can create strength from this hard situation.”

Learn more about your ad choices. Visit megaphone.fm/adchoices