Guest commentary by Courtney Fields Connelly
We were beyond thrilled to be expecting a second son, Silas, due May 2014. Our older son was 5, and we had been trying to grow our family for a couple of years.
During our routine 20-week anatomy scan, the ultrasound tech commented that she couldn’t get all of the needed images and referred me to a maternal fetal medicine specialist for the following week. We went into that appointment with no fear or concerns just assuming that more images were needed. During that long ultrasound, the maternal fetal medicine doctor told us, “There is something very wrong with your baby’s heart.” We left that appointment shocked, but ready to research the cardiac diagnosis that our son had been given. The maternal fetal medicine doctor referred us to go see a pediatric cardiologist the next week for an echocardiogram and definitive diagnosis.
Our heads were spinning. How quickly we had gone from elation to panic. I remember looking blankly at the piece of paper with our baby’s specific diagnosis scribbled on it, just staring at those unfamiliar words. Over the weekend, we spent many hours researching and learning about the diagnosis in preparation for our appointment. My husband and I desperately wanted to know everything we could about this diagnosis that Silas had been given. We wanted to know what questions to ask as we had a lot to learn.
After an echocardiogram that took well over an hour, the pediatric cardiologist confirmed the complete and severe cardiac diagnosis. With the confirmation, we struggled with making a decision from the impossible choices in front of us. We asked many questions about surgical options, our baby’s quality of life and every other inquiry we could think of as it pertained to what the reality of the diagnosis meant for our son and our family. The pediatric cardiologist patiently answered all of our questions and discussed the three-surgery process in the temporary treatment of our son’s defects as if that was the only option for our son. In our research, we had learned so much about the realities of this diagnosis and felt deep in our hearts that beginning the surgeries was not the path we wanted for our Silas. We asked the pediatric cardiologist about the option of “comfort care” (or perinatal palliative care). He looked at us and quickly told us that there wasn’t a program in our state to “do that.” After a long discussion with the pediatric cardiologist about every aspect of our son’s specific defects, we left that appointment in utter shock, trying to process what this diagnosis meant for our precious son and knowing deep in our hearts that just because something can be done medically doesn’t always mean it should be done medically.
The more we read about the surgeries that would attempt to temporarily keep his heart going, the more we realized that we could not ask our son Silas to “fight” a battle in which he would never win or from which he would never get better or be cured. We couldn’t do that to him. We couldn’t ask him to do that. It was too much, way too much. We spent a few weeks making phone calls and trying to decide where to deliver our son since we knew that comfort care was our parenting choice.
Thankfully, we connected with a neonatologist in a local hospital who recently came from another state and had years of experience in perinatal palliative care. We met with him and explained our wishes. He assured us that the choice of comfort care for Silas’ diagnosis was something he felt very comfortable leading once he was born. After we made the decision for perinatal palliative care, we knew that it was the right and best parenting decision for our precious son.
We then put all of our focus on giving Silas the best life we could with his devastating diagnosis. For us, that meant no medical intervention. Based upon our research, our faith and our ethical concerns, we said just because it can be done medically doesn’t always mean it should be done medically. We were wonderfully supported by our pastor, William (Hess) L. Hester Jr. , from our church (Southern Hills Baptist Church in Tulsa, Oklahoma) who listened to our concerns about our situation in a loving way, even commenting on the fact that he was fully supportive of our decision to pursue perinatal palliative care. And what we needed more than anything in that moment, he delivered. We did not need a grand theology lesson or the pastorally insensitive notion of “God causes everything to happen for a reason,” but the ministry of presence that through our suffering he and the church would be with us to support us however we needed. And then our pastor just listened and allowed us to talk as much or as little as we needed at various points along the journey. He was never pushy or suggestive of how we should feel or process or what we needed spiritually in the situation. He prayed for us and with us and was ready to minister to us as we needed without assuming that he knew what that meant in comparison to others facing tragedy. Just like all forms of ministry, people are unique as the experiences they find themselves in and being a loving and steadfastly calming presence meant more to us than anything else.
Silas lived an amazingly beautiful yet tragically short 56 hours in the arms of those who loved him deeply. All he knew was love. He had no medical interventions and knew no pain. We took hundreds of pictures. We read books to him. His big brother, Elliot, blew bubbles for him to see, and Silas was snuggled with kisses his entire life.
Our lives have forever been changed. My husband and I knew we had to make the best decision for Silas, Elliot and our family. It will never be an “okay” decision that we had to make. There is nothing okay about the choices we had to make. Deep in my soul it is well; I am certain we gave Silas the best life we could with his terrible diagnosis.
Silas inspired great change in our state. His story was the catalyst for the creation of The SILAS Program at Hillcrest Medical Center in Tulsa, Oklahoma. The team of medical professionals (led by the neonatologist that helped our family and many other wonderful medical professionals) walked through our journey and took care of Silas were moved by the beauty and hope found within perinatal palliative care.
In the midst of our situation, we gained a new understanding of the implications of Paul’s letter to the Romans where he states, “Now we know that for those who love God, God works together all things for the good.” Our family’s loss was and continues to be tragic and not good, but God took from our brokenness and devastation and created a community of “the good” to come alongside us and others in similar situations in the future to “work together all things for the good.” So that out of the incalculable loss, hope is revealed where there should be no hope. And support in the midst of the suffering was granted, since nothing will eliminate the pain this side of eternity.
Thus, the only hospital-based perinatal palliative care program in the state of Oklahoma was created shortly after Silas’ birth and death. The acronym of the SILAS program stands for: Strongly Impacting Lives Against Suffering. This ideal is the epitome of perinatal palliative care. It is a great comfort to know that other families in our state now have the medical, emotional and spiritual support to give their babies a life full of love.
All Silas knew was love, and because of his legacy, so will all the other babies in the SILAS program.
COURTNEY FIELDS CONNELLY is wife to Blake, mama to Elliot and Silas, high school teacher to many and always saying yes to coffee! She lives in Tulsa, Oklahoma.
Editor’s note: As we approach Advent, the season of waiting for the Christ child, we lift up parents who bear the grief of infertility, pregnancy loss and infant loss. These topics are traumatic and often not discussed, even in the church – yet many women find their lives marked by similar grief. In sharing these stories of heartache and grief in a series of five blog posts this week, we hope that others also journeying that path will find comfort and that churches will respond to their calling to serve those who are hurting.