My name is Jacquelyn Smith. I’m from Duncanville, TX, and I support HB 2684. I was here earlier this session to talk to you about HB 37. My husband, Andrew, and I have 12 children, six on earth and six in heaven. I’m here again to share the story of my seventh-born child, Gemma Gianna Perpetua Smith, this time focusing on the moment of diagnosis.
On October 1, 2019. All six kids and my husband gathered to see the youngest family member. This sonogram brought the news that our baby was going to face many medical challenges due to a chromosomal abnormality. The doctor twice recommended termination or comfort care. My response was that our family carries our babies to term, and we didn’t know enough about our child to discuss comfort care; my husband said, “We don’t kill our kids.” October 1st was a difficult day. We had to mourn the loss of the healthy pregnancy and baby we thought we had and come to know and love the special baby we had been blessed with.
At that sonogram, the first sign of chromosomal abnormality, the doctor did not offer us any option of hope. Her only recommendations were abortion, comfort care, death, or letting our daughter die. No treatment options were offered. No local resources for support. It was a very lonely experience.
Tests revealed Baby was a girl and that she had Trisomy 18. For us, it meant there was extra to love, and we prepared to advocate for our daughter’s life-affirming care. We sought the help of the support group Be Not Afraid and created a birth plan for Gemma. We received guidance on the resources available and questions to ask as we began the journey of a high-risk pregnancy. Thanks to Be Not Afraid, I had a neonatologist on speed-dial and support before, during, and after every one of the many doctor’s appointments. Having support soon after receiving Gemma’s diagnosis was key to accessing full care without discrimination.
Surrounded by life-affirming support, we made plans for Gemma’s arrival, leaning into the reality that every day was a gift. We met with doctors to ensure Gemma’s care team would offer her full care without discrimination based on her extra chromosome. For us, this meant that during my two episodes of early labor, the medical team assessed who was in distress—me or Gemma—and determined the appropriate course of action. In both cases, an amniotic fluid reduction alleviated the pressure on my body, allowing Gemma to continue growing and thriving in my womb.
On January 31, 2020, at about 38 weeks, Gemma Gianna Perpetua Smith was born by an emergency C-section. She weighed just 4lb 10oz. Gemma was stabilized and medically evaluated. Doctors had trouble getting her to breathe, so they paused care long enough for Gemma’s Daddy to baptize her quickly, and then they returned to work. Gemma lived through the night. We were able to get a family picture in the NICU and had our Byzantine Catholic priest administer the sacraments of Confirmation, the Eucharist, and the Anointing of the Sick. Gemma was facing many medical challenges that her body was unable to manage. After a very raw and painful consultation with her doctors, we knew it was time to place her life in the hands of Jesus. According to His timing, Gemma took her last breath, and we spent time with her without the wires and machines. Gemma Gianna Perpetua passed away on the evening of February 1, 2020. She was with us for approximately 36 weeks in the womb and 28 hours after she was born. The whole time, she knew only love. I have no regrets about choosing life and carrying to term from diagnosis to delivery.
Our support group had mentioned the importance of spending time with Gemma, even if that time was after death had occurred. On Feb 1st, when we had the painful consultation with her doctors, I commented that they needed to find the Cuddle Cot, and they said yes, it would be ready. Having Gemma in my room was an essential part of our family’s grieving and healing process. As a family, we were able to hold and love on our baby girl. My six children, ages 18 months to 12 at the time, were able to bond with their baby sister. We spent time together watching the Super Bowl in my hospital room, took family photos, and put Gemma’s footprints in our family Bible. Precious time making both emotional and physical memories to be cherished for a lifetime. Memories for which there was only a very short window of opportunity.
Gemma stretched my capacity to love, gave me the courage to advocate for her and other babies with life-limiting conditions, and taught me each day is a gift. Texas is an amazing place where we protect moms and special unborn babies like my Gemma. I am hopeful we can take steps to provide resources to families journeying from diagnosis to delivery or facing the stillbirth or loss of a newborn. Every little Texan has dignity and worth and deserves protection and the chance to be born with no exceptions. In the sonogram room, we were offered only two options: to kill our baby or to let our baby die. We rejected those options and chose to focus on Hope. Families deserve to know that Hope is an option and need access to the resources to guide them on that journey of Hope.