In the Spring of 2019, my life was perfect. I had just found out I had achieved my years-long goal of being accepted to medical school and that we were expecting our second child. I am paying for medical school with the military and was away from my family at initial training when I received an unexpected call from my wife. We had opted do genetic screening and a gender test through our OBGYN that confirmed that our baby was a girl but my wife’s voice was shaky and tearful as she explained that the genetic screening showed a high probability of a genetic abnormality called trisomy 18. Confused, I quickly looked up trisomy 18 on my phone and my heart sank. My baby girl was in trouble and I was 600 miles away. My life was no longer perfect and I struggled with pain deep within my soul but with my wife’s support I decided to stay and finish my training and 5 weeks later we were moving out to the DC area to begin medical school. We had almost weekly appointment with the high-risk OB who tracked our little girls progress. She had the markers for trisomy 18 but she was growing well. Her fingers may have been a little crossed but otherwise there were no indications of trisomy 18 on ultrasound. This cast into doubt for us whether the diagnosis was true or not and this confusion added to our stress. Could our baby girl be “normal” after all. The confirmatory amniocentesis crushed this hope. We were asked many times if we would like an abortion but we wanted to see our girl and spend with as much time with her as possible. When it was finally time for delivery on Thanksgiving day of 2019, we were full of hope and terror. When she was born she was only 4 lbs and needed a little support to start breathing but she had already overcome so many odds. She had survived birth while so many trisomy 18 babies do not. She survived her first week and we breathed a sigh of relief as 50% of trisomy 18 babies do not. This feeling of constant hope and terror persisted as we cared for our girl for the next 3 months. We enjoyed an amazing Christmas together as a family and she even sat on Santa’s lap, though I could tell that Santa looked a little freaked out to be holding a 4 lbs baby with a strawberry head and the skinniest little legs. She always looked so delicate but her voice was strong and she let us know when she was hungry. New Year’s and Valentine’s day came and passed and our girl was still with us and we cherished every moment. We also lived in fear every morning not knowing if she had survived the night. Having hospice care and support from our community helped alleviate our burden. She stopped breathing several times over those 3 months but she always started again after a few moments. As she passed the 3 month mark, we began to think that she might be with us for the long haul. We began to plan further ahead and started to think about what our future with this amazing little girl would be like. Seemingly out the blue, however, after returning from a family vacation she began to decline. Her breathing was heavy and slow and her heart was racing. She would not eat. She passed away in the night. Our lives were shattered and we mourned for many months before seeking counseling for our loss. I came to realize that although it was the hardest time of my life, caring for this little girl, was the most rewarding time of my life. She touched so many and the outpouring of support from our community, from my school and the military, was overwhelming and filled our hearts. She showed us the good in the world. She was perfect although her body was not. Emerson is now our angel who looks out for us and leads us from the other side. Emerson is now our angel who looks out for us and leads us from the other side. We will always be grateful for our little girl and for the oversized impact that she has left on our lives and others.
Emerson
