My son Samuel reminds me every day that all human life matters, inside the womb and out, perfect little hands and feet with ten fingers and ten toes or not. He’s a reminder that our diagnosis does not define us or determine our value.
My husband, Gabriel, and I were married in 2010 and joyfully became pregnant in 2011. Our joy was short lived when we miscarried at 9 weeks. Seeking answers after the loss, we sought out a fertility specialist. Through testing and a laparoscopic hysteroscopy procedure, the doctors discovered three medical issues that made pregnancy and carrying to term a difficult dream. But we remained hopeful that we would be blessed with a child.
Like many women desperate to carry a child, I began to pray daily. We chose the name Samuel for the child we longed to have.
In 2012, Gabriel and I were overjoyed to find out I was pregnant again. At 24 weeks, I was sent to the perinatologist to have a level 2 ultrasound. Like all expectant parents, Gabriel and I were super excited to see our baby on the ultrasound, anxious to see our precious baby’s heart, head, hands, and feet, and to learn his or her sex. Upon our request, the ultrasound technician wrote the gender of our baby on a piece of paper and sealed it in an envelope for a surprise gender reveal with family and friends.
Once the ultrasound was complete, the technician quietly left the room and a few minutes later the doctor entered. Without a word or a hint of emotion, she proceeded to do another ultrasound. When she was finished, she turned to my husband and said with a cold smile, “Well, your child has a severe brain malformation called holoprosencephaly.” Without missing a beat, she began to discuss our abortion options, not once giving even a glimmer of hope or any idea of what our options would be should we choose life.
She coldly told us we could “just get rid of IT and try again.”
I broke into tears, fully understanding at that moment what it meant to be brokenhearted. Was I really going through this? Was I going to lose another child I already loved so much? Feelings of guilt, shame and self doubt washed over me in that quiet moment in the ultrasound room. I was left wondering if I were somehow to blame and feeling that my body had failed. Yet, my husband stood firm. Gabriel looked in my eyes and said, “We are stronger than this. God will take care of our baby.” His faith and words gave me comfort and peace that everything would be alright.
I left the appointment with the gender reveal envelope in my hand and uneasiness in my heart. My dreams of a “perfect child” were not to be. I was left with the fear that I might not get to see my child alive at birth and with fears about what his life would be if he lived. Gabriel and I decided to open the envelope in the car before heading home. The unfolded piece of paper said “boy.” Peace overcame us as we thought about our son, Samuel.
Medical professionals had told us our son would not make it to birth. Medical professionals had said our son should be aborted. Medical professionals had said the condition was “incompatible with life.”
God said, “I will be with you all the days of your life.”
On May 30, 2013, Samuel was born. The sweetest little piece of heaven was finally in our arms and the journey of life with holoprosencephaly began. Since holoprosencephaly is often accompanied by other medical conditions, the first few weeks of Samuel’s life included many lab tests and imaging. It was determined that he did not have any of the common fatal chromosomal abnormalities such as Trisomy 13 or 18, nor did he have any other major organ defects that often come with holoprosencephaly.
Samuel’s diagnosis, holoprosencephaly, is where the two hemispheres of the brain do not completely separate. Samuel’s diagnosis means that he won’t ever walk or talk. Samuel’s diagnosis means he needs a wheelchair and that he will continue to have medical struggles and hospitalizations. Samuel’s diagnosis means that he is completely dependent upon his daddy and me. Yet, the value of Samuel’s life is not defined by his diagnosis. His imperfections, vulnerability and weaknesses do not determine his value. In fact, they make him more precious and worthy of protection from a society that deems his life as disposable.
Samuel is now six years old and in his short time here so far, he is happy, and has a life with great purpose. He has endured many physical struggles yet is an overcomer who never gives up. He is a reminder to persevere. He gives hope and encouragement to mothers who hear medical professionals define their children’s value by their diagnoses.
Samuel’s life journey has brought me into the pro-life movement where I have traveled with an amazing team to college campuses and to the sidewalks of Planned Parenthood to give women in crisis pregnancies hope, encouragement, and life-affirming options.
Samuel’s diagnosis isn’t perfect, but he is.
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