The midwife looked at me during a regular prenatal ultrasound and said, ‘I don’t know what this is, but it doesn’t look good.’
When my husband and I received our baby’s Trisomy 18 diagnosis a few weeks later, the pressure to terminate the pregnancy was enormous, and it often felt like an elephant standing on my chest. Everywhere I turned, the number one concern everyone had for me was how unfair it was to my daughter and stepson to bring into this world a child who would never be normal, assuming she even survived. Only 50% of Trisomy 18 newborns are born alive, and only 10% of those babies survive to their first birthday. I had lost a baby in March, and I knew in my heart that whether I terminated the pregnancy or she died naturally, we would grieve in some way. The wisest decision was to let this baby fight for as long and as fiercely as she wanted. My oldest daughter was three years old at the time, but knowledgeable beyond her years, so I decided to be upfront and honest with her throughout the trip.
My husband abandoned us and took my stepson, which was sad for her, and for a while I regretted informing her about all that was going on with the kid. Was this all too much for a three-year-old? I took it one day at a time, appointment by appointment. We would sit together and explore social media for families who also had a child with Trisomy 18. We discussed heaven and how, if baby sister died, she would be with Jesus. I brought her to my appointments so she could ask the doctors questions. My daughter became attached to her baby sister as my pregnancy progressed. She would sing to my tummy, talk to her—she even insisted on buying her Christmas presents while I was still presenting, just in case this was the last Christmas we’d have with her. We enjoyed every moment with our daughter as if she were already there, so that if she died, we would still have all of these wonderful memories with her.
Charlotte Raine was born on February 23, 2020, weighing 4lbs 3oz, and I knew it was all worth it the moment my oldest laid eyes on her. My oldest was in the NICU with Charlotte and me for several days. Doctors and nurses recognized her, and she even received a white lab coat with the Mott Children’s Hospital insignia stitched on it so she could pretend to be a doctor. Unfortunately, the hospital closed to visitors when Charlotte was two weeks old due to coronavirus, and my daughter and I had to leave Ronald McDonald House and return home. It was sad to see them apart. My oldest prayed every night that Sissy would live long enough for her to hold her one more time. She was afraid Charlotte would forget the sound of her voice, so she took her to Build-A-Bear and had her voice recorded on a bear that said, ‘I love you, Charlotte.’ Every night before Charlotte went to bed, I would play it for her and tell her all about the fun she was going to have with her older sister once she was strong enough to leave. I spent a lot of time crying in the hospital shower, pleading with God to let them spend more time together.
Charlotte and I were in the NICU for five months and then moved to a step-down facility for another month. I had a month of intense training before I was able to bring her home with all of her equipment because she had a tracheostomy and was vent-dependent. My oldest daughter patiently counted the days until she could hold her sister again, ticking each one off on a calendar. My older daughter was taken care of by a friend the day we returned home, while I went down to the hospital to pick up Charlotte. I’ll never forget her expression when my friend dropped her off. I had never believed in soulmates before that moment, yet there was no doubting their unmistakable affinity. It enveloped the room and lodged itself in my throat.
We were told Charlotte would never be able to identify her family, yet this couldn’t be further from the truth. When big sister enters the room, she searches for her and her eyes brighten up when she sees her. She looks at her as though her big sister knows all of the world’s secrets and she can’t wait to learn them from her. I frequently wonder if Charlotte is still battling because of her sister’s devotion. We all know Frozen is simply a movie, but something about the love these ladies have for each other makes me believe in magic, much like Anna and Elsa’s love. I know what true love looks like when I look at my girls.\
Our family is a little out of the ordinary. A single mother of two daughters, one of whom has special needs. This path is more tough than I can express, but being with my children every day and witnessing their love for one another? It makes everything worthwhile.”
