My first real parenting decision was made on June 26, 2015. It was simple, but not easy, particularly since it was a life or death decision. My newlywed wife Amira was 12 weeks into her pregnancy with our first child. We were told that day by our doctor that our unborn child had a condition which was “not compatible with life.” Our baby did not develop a top of the skull. There would be nothing to contain and protect the cognitive part of the brain, and therefore the brain could not develop. Anencephaly, the doctor called it. A terminal prenatal diagnosis. A birth defect. A death sentence.
And a choice. Amira and I decided we would carry our baby to term, instead of terminating. We would give our baby a chance to be born, even if death would happen the same day. Our baby had a heartbeat and was moving around in Amira’s womb. Being Christian, and pro-life, made the choice to carry to term simple. But our choice is not easy.
The Paradox of Modern Medicine
The paradox of modern medicine allows us to know more about our baby, yet because we know so much we can now see death coming in the distance. Up until about 20 years ago, doctors and parents did not know a baby in the womb had a terminal condition until the birth. Today, the capacity to diagnose problems like anencephaly gives parents heart-wrenching choices. They can elect to medically terminate the baby’s life or let the pregnancy play out. Evidence shows that the majority of parents terminate the pregnancy when they are told that their baby has a condition like acrania, anencephaly, or Trisomy 18 (Edwards Syndrome). In fact, some medical professionals are befuddled as to why parents would continue the pregnancy.
Challenges, Contradictions, and Moments of Inspiration
Our summer of 2015 has been spent dealing with a variety of challenges, apparent contradictions, and moments of inspiration.
- Some people tell us matter-of-factly that we are foolish to carry our baby to term. Abort, and move on, they say. They are mystified why we would continue with this pregnancy. In one sense, they’re right in that carrying to term does prolong the emotional attachment to our baby and therefore the grief. Yet how could we stop our baby’s heartbeat and deny ourselves the chance to hold our baby in our arms, but for a few minutes?
- Some people tell us to pray only for a miracle, even in the face of clear evidence that anencephalic babies do not survive. We have been taught as kids to pray for miracles and that God answers prayers. Yet the contradiction is that we feel like we’re deluding ourselves in praying for a miracle, as that would be akin to praying for a person with no arm to magically grow one. Amira and I switched from praying for a miraculous skull formation to praying for our baby to have comfort now, along with a warm welcome into the arms of Jesus Christ soon.
- Some people we have just met congratulate us on Amira’s obvious pregnancy, yet we don’t have the heart to tell them that we know our baby will die. Everyone is happy to see someone pregnant, and we choose sometimes to not tell people about the anencephaly diagnosis. Why should we make them feel awkward and sad, when they are giving us joy? And why not share their joy at seeing Amira pregnant? Aren’t emotions really a choice, and why not choose to be joyous?
- Sometimes we have become angry with God because of our innocent child’s deadly diagnosis, yet sometimes we feel so much closer to Him because of this challenge. It is something new for us to be angry with the Lord for what is happening, yet we feel closer to God when in the presence of such an outpouring of love from family and friends. When we receive kind words and notes from people we know well and barely know, we find that many of them see us as an inspiration.
A dear friend of our family, Jessica Geren, created a website to help raise funds for us to defer the costs of carrying Creed to term. Please click here: http://www.gofundme.com/babycreeddesal
Our Unborn Baby’s Name
Our next great parenting decision was to name our baby. We chose to name him Creed Daniel DeSa. Creed means a system of Christian belief or faith. In Hebrew, Daniel means, “God is my judge.” We chose these names because we pray for little Creed to pass quickly from the corporal bonds of earthly life into the loving arms of his Creator. While we lament his pending death, in the same moment we think how lucky Creed is to have the opportunity to be welcomed into the arms of Jesus so quickly.
Seizing Parenthood Before His Birth
And since our time with our child is so limited, we have taken on the role of parents before Creed is born. His due date is January 8, 2016. His birth date will likely be his death date too. So we have taken Creed to the beach. We have sung to him and prayed next to him even as he lays in the womb. Amira took him to a Broadway show and a Motley Crue concert. We have taken him to church and to the movies. We have taken him to my mother and Amira’s parents. We listen to his heartbeat, and Amira feels his kicks. We will take him to an NFL game, albeit in Amira's womb. We even bought him a Buffalo Bills baby shirt so he can support my favorite team with me.
I get to be a daddy and Amira gets to be a mommy, if but for a fleeting moment.
We look forward to the instant when we can hold Creed in our arms, knowing that we’ll be lucky to have just a few minutes before his body shuts down. We’ll get his footprints and handprints, take some photos and hopefully record a few sounds he makes. We will love Creed and honor him. We will hold a funeral. And we will pray. Pray for him. For other parents who have a baby with anencephaly. For Creed to have a little brother or sister one day. For us to see him in Heaven when the Lord permits us.
A dear friend of our family, Jessica Geren, created a website to help raise funds for us to defer the costs of carrying Creed to term. Please click here: http://www.gofundme.com/babycreeddesal
About the Author: Tai A. DeSa is the Team Leader of the Keller Williams Real Estate office in Allentown, Pennsylvania. DeSa is a graduate of The Wharton School at the University of Pennsylvania. Prior to entering the real estate business, he served as an officer in the U.S. Navy. The purpose of Tai's life is to be a leader and writer, and to do insanely good things for himself and others.
