This is the story of my daughter Sophie, which is also the most beautiful part of my own life’s story. It begins at the end of many frustrating months of trying to conceive and two months after the loss of my first pregnancy, in December, at the dawn of a new year. My husband and I wanted a baby more than anything and were full of anxious anticipation when my initial pregnancy tests came back positive. I followed up with my doctor immediately afterwards and eagerly went to every prenatal appointment. At my first ultrasound, it was clear as day that I was carrying twins! Queue more nervous excitement, fear, disbelief. Twins run in my family, but the news still sent us into preparation overload. My first genetic screening came back extremely low risk and all signs pointed to a healthy pregnancy. I asked so many questions, worried about BPA and air pollution. I walked into my 20-week ultrasound convinced that it was simply another routine visit. I felt on top of the world.
That visit marks the moment my world collapsed. I should have guessed from the prolonged silence of the sonographer that something was wrong, but I was still oblivious throughout the scan. It wasn’t until she had seen enough that she told me she saw multiple abnormalities in one of my twins. She named a few findings which would eventually include a strawberry shaped skull, choroid plexus cysts on both sides of her brain, a large hole in her heart, rocker-bottom feet, a pelvic kidney, a bilateral cleft lip and palate, polyhydramnios. She was weeks behind in terms of growth and was below the first percentile in size by the time she was born. Even days before I gave birth, I was warned that I could lose her at any time. I walked on glass.
Covid had just begun to spread at an alarming rate, so that visit also marked my first time sobbing into a mask (though not my last). Things moved quickly after the anatomy scan as my excellent OBGYN and nurses saw to my now complex care: first a detailed ultrasound at the hospital, followed immediately by an amniocentesis of both twins. The results were expected: my daughter, twin A, had full trisomy 18 and twin B, my son, was genetically normal in every way. An MFM specialist soon afterwards presented my options: reduce the pregnancy (which would be nearly impossible at the time since it coincided with the Covid lockdown), move forward with the pregnancy and plan any necessary medical interventions to prolong the life of my baby, or move forward with the goal of palliative care and let the baby live as long or short a life as she would without invasive procedures or heroic efforts to extend her time with us. I gave serious thought to the first and last options, but the fear of losing both twins was too great to choose a reduction, so I decided to continue the pregnancy and offer as much comfort as possible to twin A if she was born alive. We were referred to a doctor that specializes in pediatric palliative care and made specific plans for each possible outcome of my totally insane pregnancy.
After making my decision, I needed an electrocardiogram to confirm twin A’s heart problem. Many blood tests and ultrasounds tracking the progress of my pregnancy later, I went into premature labor at 36 weeks. The doctors stopped my labor with IV fluids and two weeks later I returned to the same hospital for my scheduled c-section. I was sleepless, shaking uncontrollably from the IV fluids, and vomiting frequently from the pain medicine when I was prepped for the operation. My husband and I didn’t know if twin A would be born alive, so when they pulled her out and we heard her cry, I was beyond relieved. Her brother was also born healthy but his umbilical cord had wrapped around his neck twice, so all around, from conception to birth and forever thereafter, my twins were remarkable and full of surprises of all sorts.
Sophie was never, for a single moment, apart from her family. In the hospital we accepted visits from doctors and nurses but did not allow any invasive testing or procedures done on our baby girl. She needed an NG tube for feeding and we managed each concerning symptom (low oxygen, low temperature, spit ups, etc.) as they arose. She came home under hospice care after three days and we rejoiced that she survived long enough to do so. Initially, I resented our hospice team. I couldn’t help it; I just wanted to be alone with my babies, but the incredible care they showed us throughout our time with them was invaluable. Because of them, nothing was missing from our daughter’s short life. It was so complete in every way: full of joy, comfort, suffering, silliness, quiet time, twists and turns that make up a life well lived. Every day was so rich and full of all of these things because we knew that she might not see the next.
My daughter was an exceptional little baby. She weighed a measly 3 pounds and 3 ounces for the first five weeks of her life, despite our frantic attempts to help her gain weight. It wasn’t until she was put on a continuous feed with the help of a pump that she began to grow. By the time she died she weighed a little over five pounds. Despite her small stature, Sophie was full of attitude and personality. She loved to be held and doted over. When she was awake, she would wiggle in your hands and chirp at you to voice her pleasure, ask for milk or reprimand you for an invisible slight. She was incredibly expressive, and as she grew stronger so did her desire to be heard. Diagnosed with colic, she would cry furiously for hours every morning, afternoon, and night, as we held her and did our best to sooth the fierce and tiny warrior. She kept our hearts overflowing with love and fear.
The top of Sophie’s head smelled sweeter and more wonderful than anything else in the world. Her bright blue eyes would peer at you knowingly as she thrust a hand outwards to grab at you. The smallest hands, so strong! I loved to kiss her feet, sometimes to say good morning and sometimes to say good night. In the middle of the night when she was crying and I was rocking her, we would look out the window together and I would sing her lullabies. Sometimes I would catch my husband singing to her or nuzzling her tiny nose, he loved her so much. We never rested. I was always on guard and ready to help with any discomfort, fever, pain, nausea, or any other new symptom. The best feeling in the world was seeing Sophie sleeping warm and comfortable. Her sense of peacefulness was so clear and palpable on her face, it made every effort worth it. Sophie never stopped growing throughout her short life: she grew slowly and by small increments, but she never stopped growing. She also never stopped fighting, and only fought harder as she grew. She changed profoundly, from a small, quiet, struggling baby to a strong and incredible soul like none I’ve ever met before or will ever meet again.
At home, the days turned to weeks, and the weeks turned to months. Sophie and her brother learned new skills like smiling and holding their heads up. Her brother was always around three times her size, but never struck her with his swinging arms or rolled over onto her when they were side by side. He liked to be next to her, and she liked to be near him as well. They had the sort of communion that is common among twins, no matter how different. We learned, as well as my mom and dad who were able to help us, the nuances of our hectic life caring for the twins. Sophie’s grandpa became an expert at holding her for hours at a time and being in his arms was often the best medicine for her. Some days were a breeze, others were intolerable. Family members visited and learned that despite her fragile appearance, there was so much more to their niece or cousin than met the eye. Friends met the babies and became important parts of our unusual family. Halloween passed, then Thanksgiving. My husband and I caught covid despite our cautiousness and recovered, nearly crushed by the fear that we would pass it on to the babies, who were thankfully unaffected. Christmas was the most special time of all. Everyone, including Sophie’s incredible hospice staff, had gone nuts buying gifts and supplies and the living room with the Christmas tree was filled with presents. Music filled our warm and happy house. We cherished every moment and were so thankful for every kind gesture we received.
By that time, however, Sophie hadn’t been well for more than a week. It started with abrupt and violent crying. She was in pain, and every time we found a solution to ease her pain it became more difficult to manage. A few days would pass without incident, raising our hopes, and then she would decline again, abruptly, frighteningly. My husband and I, with help, became experts at providing supplemental oxygen, administering medications, discerning problematic symptoms from normal Sophie things, learning to wait and watch. On Christmas day we gave her morphine for the first time when nothing else worked, and the day before New Year’s Eve she passed away. She died almost exactly one year after she was conceived, December 30th, 2020. She was almost four months old. The night before she died, her doctor visited the house at our insistence and was concerned with her heart. After the doctor left the house, she began to have seizures. The following morning, her nurse (by then an extended member of our family) let us know with a voice full of sorrow that Sophie was going to pass away and had hours, perhaps days left. Throughout that day we tried various medications to help her pass away peacefully, but in true Sophie fashion she was destined to die fighting. I held her as she struggled, as she coughed and cried, through each seizure and gasp, as her tiny heart failed, until that evening she died in my hands. Her dad and her grandma were at my sides, and her doctor cried with us as we said goodbye. If it were not for my husband’s constant, unwavering love and the perfect sweetness of my son which did not stop for one moment, I would have lost my mind. The thought that Sophie suffered in her last moments is the most difficult thing that I live with now, but the knowledge that I got to be her mother- in the truest sense- while my daughter left this world is enough for me to accept her passing. It was brutal and unfair that my little baby died in pain, but my love for her will never die or even lessen, it will only grow. Slowly and by small increments, I feel it growing every day, just like her.
I feel her weight in my arms even though my arms no longer hold her. I can smell her beautiful smell and feel her tiny, determined movements. Even in a much quieter house, I still hear my baby making her incredible, improbable voice heard. I see so many echoes of her in her twin brother, who is destined for a life full of love and comfort. Everything she gave me, even her last moments, is a gift that I will never take for granted. All of the lives she touched from near and far will continue to be marked by the miraculous nature of her presence on earth. As I write this, it has been two weeks since she passed. When the winter ends and the ground thaws, I will plant flowers to remember Sophie and everything she brought into the world. She taught me the meaning of unreserved devotion, and I will continue to be devoted to her as long as I live