Matilda and Frida were born a day apart. Amy and I met on the Positive About Down Syndrome Great Expectations Group and were pacing our living rooms at the same time for a good few days before our girls made an appearance. We have never met, but have shared messages and experiences over the last 6 months. As I have no experience of either feeding tubes or heart surgery, I asked Amy to prepare a piece to explain their experiences, as she gives great advice to other parents in similar circumstances. Just two weeks post-op, Matilda is thriving and I think it is incredibly helpful for new parents to understand that whilst medical issues can be scary, they can also be dealt with relatively easily.
Matilda was diagnosed at birth with Down Syndrome. Following 12 week screening, we received a high chance result of 1:28 that she would have Down Syndrome so it wasn’t a huge shock. But I was a little worried. Questions ran through my mind; would she ever live independently? Would she be able to communicate with us all? What would her brother and sister think? Never did it cross my mind that she would also have a heart condition.
At her 20 week scan, I asked the sonographer to triple check everything that could be a marker for a baby with Down Syndrome and was reassured everything was within range and 'normal.' So when she went for a routine heart scan at 2 days old I was sure we would be all good and free to go home from the hospital that afternoon. She was feeding well, slept well, and looked just as a newborn baby should- beautiful. Matilda went into the scanning room whilst I waited out in a family room and she was in there what felt like an eternity. Having previously worked in maternity units and having accompanied the cardiologist into scans with patients, I knew something must have been found, as it was taking far too long.