Sophia’s tiny hand was minuscule compared to Jason’s index finger. Her slightly bent digits wrapped gently around his seemingly monstrous ones as she clinged to each second of breath she had left in her.
At 9 oz, Sophia’s delicate frame fit neatly into one adult-sized hand. Her head, the size of a softball, carried with it the adorable tiny features that give us each a physical personality. Her eyes remained fused shut, her mouth agape for air. Born at 20 weeks, she had no chance of survival. Born with an unknown–and apparently severe–condition, her body was wracked with joint contractures as her knees, wrists, fingers, and elbows were stiffly bent in ways they should not have been. Other anomalies may have lingered on the fringes of our awareness, but when she was born that was of no concern to us. All we saw was our baby girl struggling to live. A baby girl destine to lose that battle in our arms.
Five years later, our pregnancy with Evelyn was highly scrutinized. What started out as normal development seemed to take a drastically alarming turn at 16 weeks. Her wrists started to bend and her feet appeared clubbed, just like her sister Sophia’s were. Her fetal movement was greater than her older sibling’s, yet as each week progressed, even that lessened. Doctors guessed it was the same mysterious genetic condition that overtook Sophia, yet no one knew for certain. We had mountains of ultrasounds, blood tests, and echocardiograms, and yet no information was ever discovered about her condition. Having experienced one premature birth already, from week 13 of this new pregnancy I was on pre-term labor watch. Even with the skillful eye of several professionals, no one predicted that she would also come early, not even the ultrasound two days before Evelyn’s birthday. But this time, at 30 weeks 4 days, she had the fighting chance that Sophia never had. Her contractures remained less severe, her in-utero tests remained normal, and her heart was given a clean bill of health. As we sat in the hospital at 1am July 16, 2015, scrambling to do all we could to stop labor, my body was determined to bring this little girl into the world early.
We first found solace in supporting the March of Dimes after we lost Sophia. With 1 in 10 babies born prematurely, often to unknown causes, we included a request in her obituary for our supporters to donate to this organization. With this gesture in Sophia’s memory, we turned a bit of our unrelenting grief into a desire to help others avoid our fate. As champions in research to prevent premature birth and find causes for unexplained disorders, the March of Dimes gives hope to families such as ourselves. Premature birth happens to many and does not discriminate. We followed all the proper steps to ensure our pregnancies would be healthy and uneventful. Through no fault of our own, we were still destined to have monumental struggles. With both research and education efforts underway, the March of Dimes promises the chance to help more babies have a healthy start and gives families the much needed encouragement in achieving their dreams.
As we carry on as a family of three with our now 20-month-old Evelyn, we feel extremely fortunate that she made it far enough in-utero to not only survive, but to thrive. Despite some delays in gross motor skills, she fights to do all the things her toddler classmates can. Her ability to stand has drastically improved, and her drive to walk carries her through each fall, each stumble, each tear. As her development is otherwise typical, we are blessed by her health, her stamina, and her strength as a preemie. A true fighter, she brings her giggles, silly faces, intelligence, and playfulness into our home and into the hearts of all who know her. Each day we still think fondly of Sophia, and we have the great fortune to live with Evelyn.
We have been grateful to have a large support system of family, friends, coworkers, acquaintances, and even strangers with whom we had an instant bond through our stories of Sophia and Evelyn. As Jason and I give money each year to the March of Dimes in memory of Sophia and in honor of Evelyn, we alone cannot give nearly as much as we would like. Every Spring, our efforts to raise money for the March for Babies is our way of contributing to our community of those who face similar struggles. As we combine efforts with family and friends, no amount is too small. $5 added to our team donations is as thoughtful and welcomed as larger amounts. The gesture alone is humbling. As we march for our babies, attaching Sophia and Evelyn’s name to our final fundraising amount always yields a pride we cannot accomplish on our own. When we walk, we think of all those who supported us though the years, monetarily and otherwise, and we give our deepest gratitude to those who understand that Sophia and Evelyn profoundly changed us. Our daughters made us more aware of the pervasive fight in which we are engaged for our children. Through our efforts, we are proud to be a part of what may be the answer to preventing other families from suffering in the ways we have.
Donating to Team Sophia and Evelyn is easy, secure, and will aid us in fulfilling our goal of funding research to end prematurity and birth defects. Simply click the link provided below, and chose “donate” on my March for Babies page. Once there, you can read more about Sophia and Evelyn and why this cause is so meaningful to us.