Between September of 2018 and May of 2019, we had two early losses. They were devastating.

In May of 2019, we found out we were pregnant again and were cautiously overjoyed. We had an uneventful, blissful and nauseous, 10 weeks of pregnancy before our first ultrasound revealed some concerns.

First, our baby’s heart rate was uncommonly high. Second, she had some fluid retention behind her neck called a cystic hygroma. These are often associated with chromosomal abnormalities, so we sent bloodwork off for testing.

When we got the call with the results, we were told that we were having a little girl, and that she was also positive for Turner’s Syndrome. Turner’s Syndrome is a chromosomal abnormality where a female is born with only one X chromosome. Women with Turner’s Syndrome can live very full, normal, beautiful lives. In our minds, this was unexpected but great news. Our little girl could live! The doctor continued to tell us that the hygroma was still troubling, but we’d continue to monitor it and would be referred to a specialist for the duration of the pregnancy.

Our first ultrasound at the specialist was informative, but heartbreaking. Our daughter, Sami, was still retaining fluid and was now considered to have hydrops fetalis. This complication is also often associated with chromosomal disorders. Hydrops is a condition in which large amounts of fluid build up in a baby's tissues and organs, causing extensive swelling. The prognosis was not good.

I carried her for 8 more weeks before her heart stopped, and she was born still weighing just 15 ounces. She was beautiful.

Women and girls with Turner’s Syndrome are called butterflies. The butterfly symbol came to represent the metamorphosis from their difficult beginning to its emergence as a strong, beautiful being. This connection to the butterfly has resonated with me since then, and our family sees them often and they seem to follow us around. I feel my girl with me nearly always.

As I began considering this career shift, I began seeing swallowtail butterflies everywhere. The concepts associated swallowtail butterflies are hope, endurance, change, and life.

The name feels right. It’s a special nod to our angel girl who cannot be physically with us, and encouragement and inspiration for me to continue to push for change and hope for new parents in a challenging season of life. It also gives me a way to constantly honor her, and parent her in the only way I can.. by speaking her name. Thank you for the opportunity to do just that.