In June, 2016, my husband and I found out that we were expecting our first child. We were so excited to become a family of three. At 20 weeks, our anatomy scan revealed excess fluid around our baby girl’s heart- this began our journey with Hydrops Fetalis, the condition that ultimately would take our daughter’s life.
Hydrops is a condition in which fluid accumulates in two or more compartments. It can be caused by various diagnoses, including genetic, viral and impaired lymphatic flow (to name a few). Often, the diagnosis that led to the condition goes unknown. It occurs in about 1 in 2,000 births annually. The prognosis is poor.
At 20 weeks, the doctors gave us the option to terminate or to get a second opinion. We were seen at Children’s Hospital of Philadelphia the following week.
For the duration of the pregnancy, the fluid continued to fluctuate. At 26 weeks gestation the fluid was impairing her lung development so Noelle and I underwent two surgeries to have shunts placed in her right and left lung. By week 28, both lungs had expanded and we were hopeful for our little girl. At this point we had spent many nights in the hospital and were traveling back and forth three times a week for appointments. My husband and I were fortunate to have supportive employers and a great hospital that was only 20 minutes from our home.
At 30 weeks, Noelle’s movement decreased and she was in distress. We had an emergency C-section and she was immediately taken to the resuscitation room to drain the fluid from around her heart and to help her breathe. Her lungs were too weak and after 32 minutes here on earth, she was taken to Heaven. We were able to hold her and our time with her will forever be the most precious, cherished time in our lives- the moment we became Mommy and Daddy, a family of three.
On her first birthday, December 13, 2017, we incorporated Noelle’s Light, a New Jersey non-profit organization with a mission to financially support families facing a life-threatening fetal diagnosis. On Noelle’s second birthday, we partnered with the Philadelphia Ronald McDonald House to provide financial support to the fetal families staying at the home.
Every day, we think of our first-born. Her name fills our home as we work to build Noelle’s Light and show photos of our Noelle to her little sister, Lillian.
We are hopeful that one-day there will be a cure for Hydrops Fetalis. We were blessed to be able to do everything we could to save her and hope to help other families do the same because every life is worth fighting for.
Noelle’s fight is not over.