Helping Lily Move to the USA

Our precious Lily, was born on July 25th 2023, after only 32 weeks. When she was being discharged they found a heart murmur, the doctor also wanted to run some tests because it's very common in Down Syndrome babies. Unfortunately, Lily has come back as having DS. We're obviously really upset and overwhelmed, but of course doesn't change how much we love her.

We're pretty shell shocked. Last week, we saw the pediatrician - she has an incredibly rare version of Down Syndrome called Mosaic Down Syndrome. Only 19% of her cells carry the extra chromosome, but she still carries the same risk of health issues as a standard Down syndrome baby. It does explain why the NIPT test didn't pick it up and why she doesn't have many of the physical characteristics at the moment.

So we saw cardiologist yesterday and it's not great news. She has a condition called "avsd" where there are two holes in her heart. Good news is one of these has already healed up on its own. The much worse news is that two of her valves are leaking badly, the only remedy to fix this is open heart surgery. We're just not sure when yet - at least a few months, unless she takes a downward turn.

We have always planned on moving back to the US to be closer to family, but this expediates things and there will obviously be some higher medical costs.