Henley’s Story

After a seemingly perfect pregnancy, Henley was delivered via an emergency c-section and born with a condition called Hydrops Fetalis, which is an accumulation of fluid in two or more fetal cavities. She was immediately transferred to St. Louis Children’s Hospital. In the first few days, doctors told us that she probably wasn’t coming home with us. She made a fast turnaround, and, after just 22 days in the NICU, we took her home. However, she had a catastrophic brain injury.

Ultimately in her short two years on earth (two years, one month, and 12 days to be exact), Henley faced many complicated diagnoses that no amount of therapy sessions or medications could improve.  Henley liked taking walks and taking baths. Most of all, she loved looking at the family Christmas tree. She enjoyed it so much that we kept it up all year long for her. Our sweet girl was placed on hospice just under a month after her second birthday and earned her angel wings on August 20th, 2017.

Around the time Henley went on hospice, our palliative care team connected us with the June Jessee Memorial Foundation. June’s mom had experienced similar circumstances that we were facing with Henley. At first, I was hesitant to reach out because the thoughts you have when your child is critically ill are not always pleasant, and it can feel very isolating. The first time I talked to Genny, however, we had an instant connection. She knew what I was feeling and had experienced many of the thoughts I have (and feel guilty about). Having someone to reach out to, vent to, and cry to has provided me relief and solace during such an unimaginable time. I believe our girls and their curls are the best of friends up in heaven.