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Around 12 weeks of pregnancy, we discovered that I was carrying twins, and identical twins at that. We were immediately referred to Maternal Fetal Medicine (MFM) to be monitored for my high risk pregnancy. Throughout it, I was going in at least twice a month for scans to watch for TTTS, with a passing mention of TAPS at the very start to never hear of it again after.
For having a twin pregnancy, everything was smooth and scans were easy. No issues presented themselves. At 34+5 weeks, I went in for our usual scan, with no significant problems. 2 days later, I woke up to contractions. Since I was exactly 35 weeks and a twin pregnancy, the doctors advised us to come in for monitoring to verify if labor was truly starting. About 5 hours later, I was going into the operating room after discovering that one of my girls had no heartbeat and the other was in a distress.
On October 20, 2022, we lost our beautiful Eliza that day, and our Ophelia (“Phee”) was left fighting for her life. We discovered that Phee was severely anemic and at a week old, she had experienced a severe brain injury at birth. This led to a long medical journey for our girl, starting with a 5 week stay in the NICU. She got the main diagnosis of quadriplegic cerebral palsy and chronic epilepsy, alongside other major medical ones.
Even though she had so many medical challenges and way too many hospital visits, Phee was fiery. From the very start, she was a fighter. We nicknamed her Mighty Ophelia for the warrior spirit she carried and brought out in others. She was pure joy and love, and anyone who met her instantly loved her. For 20 months we got to love and be loved by her. After a valiant fight with a viral infection, on June 20, 2024, our Mighty Ophelia fought the good fight and passed in the arms of her mom and dad.
Donations
From TAPS Support founder Stephanie Ernst:
Your donations will help support an exciting project we’re developing: providing grants for future researchers to publish their theses. So far, we’ve helped two up-and-coming researchers, and we’re eager to continue this vital work. On average, publishing a thesis costs around $2000. By funding these grants, we encourage researchers to pursue their studies and create opportunities for sharing knowledge and education. With your help, we can foster a thriving future for research into TAPS, and related diseases.
More about our mission, vision and values here.
Please use the drop down box to select the currency you wish to donate in. If you require a receipt, please email hello@tapssupport.com with the subject line “Ophelia and Eliza Donations”.
For more information on how we use donations, and our committment to financial transparency, please visit our donations page. Stichting TAPS Support (The TAPS Support Foundation) is a registered non-profit organisation (KVK 78249333) located in the Netherlands, and we use our funds to support research into monochorionic twin complications, including but not limited to TAPS, TTTS, and SFGR/SIUGR worldwide.
Gallery
The Snodgrass family have shared some of their most precious photos with us to help tell their TAPS story. We are grateful for their generosity.
Images shared are used with permission from the Snodgrass family and may not be used or replicated without their consent.
For families who have experienced twin loss, and are looking for resources and support, we work closely with both Footprints Baby Loss, and the Skye High Foundation.