Looking for others with similar twin cardiac diagnoses (possible 22q link)
My partner and I are expecting MCDA twins with significant congenital heart conditions. Our larger twin has DORV with malposition of the great arteries, and our smaller twin has Pulmonary Atresia with VSD and MAPCAs (this was initially flagged as Tetralogy of Fallot before being reassessed). We’re in the UK, working with fetal cardiology and waiting on further imaging to firm up the picture.
We’re trying to connect with anyone who’s been through something similar, especially if 22q11.2 deletion came up as part of your diagnosis or testing. Would love to hear how your pregnancy/delivery was managed, what surgical pathway your child ended up on, and how things are going now if you’re willing to share.
Thanks for reading, and happy to answer questions if it helps anyone else too