At 24 weeks pregnant we learned that our daughter, Lily, had CDH (congenital diaphragmatic hernia), a rare condition that is life-limiting in 50% of cases. Thankfully, Lily was given a higher than average chance of survival of 70% upon consulting with her fetal care team who are experts in the treatment of CDH. However, at 27w6d, I was diagnosed with HELLP Syndrome a rare, life-threatening maternal health condition. The only known treatment for HELLP Syndrome is delivery.

Our daughter Lily was born just a few hours later on April 19th, 2021 weighing 1 lb 9 ounces, she was 14.5 inches long, and she was able to spend an hour and a half with us before she passed.

Due to Lily experiencing severe IUGR she was far too little and her CDH was far too severe to receive interventions. The threshold for interventions tends to be 32 weeks but can occur earlier if a baby is big enough to receive the interventions. Sadly, Lily was just too little, but she made sure to spend all of the time she could with her mom and dad.

Lily is survived by her big brother, Elliott who just turned two on 7/24, just 11 days after his sister's due date on 7/13. Elliott did not have the chance to meet his sister following her birth as he was just too young to meet her and he is often incredibly scared in medical environments. However, we have been using books to talk to him about his sister and to allow him to grow up knowing more about her story and the stories of the countless babies who live shorter lives just like Lily.

—Victoria