Willa Michele’s Story

As told by her mother Michele.


After just one year of marriage, and one miscarriage, my husband and I were thrilled at the idea of having a baby together. I had a 12-year-old from a previous marriage, and this was his first baby. I had worked through infertility issues with my son and joy filled my heart at the prospect of being a mommy again.


At our 12-week ultrasound I was sent to the Maternal Fetal Medicine because of my age.  The doctor informed us of a 2mm cysitc hygroma at the base of her neck, telling us it could be “nothing” or early indicators of heart issues stemming from a simple defect to chromosomal abnormalities.  With that wide of a spectrum, we opted to move forward with the pregnancy and let nature take it’s course.  The doctor informed us that if it were the worst case scenario, I would most likely miscarry by 22 weeks.


At  22 weeks a fetal echo-cardiogram showed a beautiful healthy baby girl.  The hygroma was resolved and her heart showed no abnormalities. She was, however, very tiny. She was our dainty diva. Her size and my placenta previa offered the blessing of weekly monitoring. At our 33-week appointment, she had slowed even more, and was no longer getting oxygen from the placenta. I immediately went in in for and emergency c-section.


Willa Michele was born at 3:45 that Wednesday afternoon… on October 15. National Infant Loss Awareness Day. She was immediately placed in the NICU, and we began our journey there. Little did I know that she would never leave. The following Monday we received the chromosomal test results as doctors had requested. Though she had no physical markers of any condition, she wasn’t responding or acting like a “normal” preemie.  She was diagnosed as Full Trisomy 18- Edwards Syndrome. And incompatible with life.


Knowing her tiny body couldn’t handle the necessary surgeries to “fix” all it’s issues, we opted for comfort care.  Big brother spent time, grandparents, aunts, and mom and dad.  We just filled her last days with love.


Willa left us on October 23rd – eight beautiful days. There has not been a day since she was born over a year ago that she has not been on my mind.  My heart is still broken and I know it will not ever fully recover in this life.  Grief does truly and deeply exist where love reigned.


Read more of Willa’s Story here.