The story of Emilie and Mathilde
Emilie and Mathilde were born at 31 weeks with Twin Anemia Polycythemia Sequence (TAPS), which affects just 3-5% of twins sharing a placenta.
TAPS is caused by tiny connections in the placenta, less than 1 millimeter thick, and red blood cells only pass from one twin, to the other causing chronic anemia and polycythemia.
There are 2 forms of TAPS, one happening after laser surgery for twin-twin transfusion syndrome, and the other is spontaneous TAPS. Both have serious short and long term consequences.
Emilie and Mathilde had spontaneous TAPS. The girls were diagnosed at 24 weeks and were cared for by an expert team who monitored them closely, and made the decision to deliver them at 31 weeks. While premature, the girls thrived and are now 9 years old.
TAPS twins are at risk of premature birth, and in spontaneous TAPS, the donor twin (or anemic twin) is at risk of a rare type of deafness (auditory neuropathy spectrum disorder – ANSD). There are also increased risks of developmental delays for both twins, with the donor twin being more severely affected.
There have been challenges for us, as TAPS isn’t widely recognized, meaning that it has been a struggle to get long term followups. We are exceptionally grateful that we have had the support of the LUMC team who have followed up the girls from birth, and have given us expert advice and support.
Their support has inspired us to start a foundation to help other families diagnosed with TAPS (and other complications that affect monochorionic twins), to give them access to research and a community that understands where they have been, and can help them advocate through shared experiences.
I don’t think I could ever than the team at the LUMC enough for the care and support they have given us over the past 9 years since our TAPS diagnosis – but because of them, I have 2 amazing, healthy girls who, while they have some challenges associated with TAPS and prematurity, I would not have them any other way.
www.tapssupport.com