The story of Willow Grace Burg begins on December 1, 2015, the day we discovered I was pregnant for the second time. We quickly began preparing for Baby #2, even selling our home and buying one with a layout more suitable to multiple children. I experienced quite a bit of anxiety regarding this pregnancy, even though my early pregnancy with Willow suggested nothing out of the ordinary. I spent many sleepless nights lying in bed, trying to ease my fears that something was wrong. However, on March 3, 2016, Andrew and I discovered that my fears had been warranted. At our 20 week ultrasound, we heard the words “congenital diaphragmatic hernia” for the first time in our lives, and we knew, regardless of our baby’s outcome, that our world had changed for eternity.

After several appointments with specialists, we learned that our baby girl’s left sided congenital diaphragmatic hernia (LCDH) was very severe. Her stomach, intestines, liver, and spleen had moved into her chest cavity through a hole in the left side of her diaphragm muscle. This had also caused her heart to shift to the right side of her chest. As a result, there was very limited space for her lungs to develop and grow. In fact, her left lung was essentially non-existent, while her right lung was a mere sliver of tissue. When we learned how severe our daughter’s condition was, we decided she needed a name with meaning, with power, that resonated with the hopes we had for her survival. Willow Grace was the perfect choice. 

As is common with CDH, I developed polyhydramnios (an excess of amniotic fluid) and experienced preterm labor. At 35 weeks and five days gestation, Willow Grace Burg was born on June 23, 2016 at 7:07 pm in Madison, Wisconsin. She weighed 5 pounds, 13 oz and measured 17 inches long. She had a full head of hair, and her beauty was breathtaking. She was intubated immediately after birth and whisked away to the NICU to be put on life support. Despite fighting courageously through the night, Willow’s status declined, and on the morning of June 24, we found ourselves making the heartwrenching decision to allow her peace. Willow Grace died in my arms that morning, only twelve hours and 36 minutes after her birth. Our hearts will never be the same.