Elisabeth Slotkin In October of 2001, my husband and I were confronted with a hard row to hoe: an ultrasound revealed that something was seriously wrong with our four-month-old fetus. Aware that we were only weeks away from the deadline for legal abortion in our state, our doctor strongly urged us to consider an amniocentesis. From what he saw on the ultrasound screen, he suspected our child had a chromosomal disease called Trisomy 13, which, he told us, “is incompatible with life.” Amniocentesis, the doctor explained, would let us know for certain whether our child had a chromosomal abnormality. He added that it also carried certain risks for the fetus, including miscarriage. I told the doctor I had come to believe abortion was a terrible mistake. “Why,” I asked him, “should we risk killing our child merely to satisfy our curiosity?” Our doctor looked me straight in the eye. “You are going to get big,” he said, “and people you don’t even know will come up to you in the grocery store. They will be excited for you and ask when your baby is due. All the while, you will know the hard truth that your baby is not going to live.” He added compassionately, “You may not be able to handle that.” My husband, Steve, and I were shaken. I felt numb. The previous ultrasounds and prenatal visits had indicated that all was well. We had joyfully begun preparing the nursery. Nonetheless, I felt the peace of the Lord, and my resolve was steady. “I can handle it,” I told him. When my father and a long-time friend heard that all was not well, they tried to persuade me to consider abortion. “You don’t know what you’re facing,” they said. “What if the baby lives a full life-span and needs total care? What kind of life will you have?” My father argued, “If the baby is going to die anyway, why not terminate now? The longer you carry the child, the harder it will be for you.” Before we ever tried to get pregnant, Steve and I had discussed abortion. I had had an abortion as a teenager merely to avoid telling my parents I was pregnant. In recent years when I began seeking the Lord, though, I had come to regret my abortion–and repent for it. Steve thought abortion was sometimes acceptable, but he was willing to go along with my conviction. Now that the problems we faced were no longer hypothetical, however, I raised the issue again. I asked him what he wanted to do. For a few days, Steve weighed the pros and cons of abortion. Then one day, as he was driving home from work, he heard a radio spot for the Make-A-Wish Foundation, which grants the wishes of children who have life-threatening illnesses. Steve thought to himself, “If my baby had one wish, what would it be?” Instantly, he knew the answer: it would be to live. From then on, abortion was out of the question for both of us. At some point I decided to research Trisomy 13 on the Internet. The pictures I saw broke my heart. The afflicted babies were severely misshapen, sometimes having only one eye, no nose or a nose on top of the head, malformed genitalia, extra fingers and toes. That night I told Steve what might await us. To be honest, I felt shame. “Maybe you should not come into the birthing room,” I suggested. I pictured myself holding our baby in my arms, not letting anyone see. “No,” he said. “I don’t care what our baby looks like. I am going to be there with you, and I am going to love him or her no matter what.” Since we believed our baby would not live long, we tried to make the most out of every day of the pregnancy. We sat at the piano and played from a book of children’s songs. “Somewhere over the rainbow way up high, there’s a land that I heard of once in a lullaby.” We watched Roadrunner cartoons and Christmas specials. We rejoiced over every kick and hiccup. While the baby was inside me, my body was doing most of the work. Once the child was born, however, her organs would not be strong enough to sustain her. “I wish you could stay pregnant forever, so our baby could live,” Steve said. Towards the end of the pregnancy, the doctors convinced us that the risk of miscarriage was negligible, and an amniocentesis would help them know whether or not to attempt immediate, surgical procedures. Since this was for a valid medical reason-not just to satisfy our curiosity-we agreed. The amnio results arrived about two weeks later. We learned that we were having a baby girl; and, sadly, we learned that the initial diagnosis had been correct: she had Trisomy 13 and was beyond the help of modern science. In the early morning of March 4th, my water broke. I woke Steve and told him it was time for us to go to the hospital. Before we left, we got down on our knees and prayed. I thanked God for the privilege of carrying our baby. We asked for a miracle; we asked for God’s comfort and peace; we asked for His will to be done. On the way to the hospital, we sang songs to our little Katie. We had been told she might be stillborn, so we imagined ourselves dancing with her in a field of daisies. By the time she was born, Katie was blue and still. Steve was praying that I would just get to hold her for a few minutes before she died. The doctor carried her to the warming table, and she started to breathe. Finally, they brought her to me. She seemed perfect, and she had a a head full of dark hair. My heart skipped a beat. Had God healed her? I looked down at her hand and started to count her fingers. “Don’t count,” my husband said. Attached to Katie’s pinky was a tiny extra finger, a telltale sign of Trisomy 13. When Katie showed signs of hunger, I put her to my breast but could not get her to suckle. The nurses tried to help, but they finally told us we might have to choose between an IV, a feeding tube, or letting her starve to death. Reluctant to cause our daughter any discomfort, we were not sure what we should do. Finally, one of the staff suggested we try a bottle. To our delight, Katie began to suck at the plastic nipple. We were overjoyed to see her alive and feeding. Since the first indication of Trisomy 13 in October, we had stopped working on the nursery and avoided baby stores, for the doctor had told us she would probably live no more than a few hours. So it was with great pleasure that Steve walked into Wal-Mart the next morning and bought four shopping carts full of baby accessories. He brought the new car seat into the hospital, and we did what we had never expected to do: we loaded up our things and took our daughter home. We were able to hold, love, and kiss our daughter for two wonderful months. Steve took a leave of absence from work so that he could spend every possible moment with her. We explained to friends that Katie was a “special needs” child. “She needs extra kisses,” we said; and we gave her all the kisses we could. Our precious daughter is gone now, and we miss her terribly. Katie was a gift from God, and she changed our lives forever. We have wonderful memories and hundreds of pictures, and someday we hope to see her again in heaven. Those who urged us to consider abortion did not realize what a huge blessing God had in store for us. They do not understand that God does not make mistakes. A Note from Katie’s Dad, Steve: My love for Katie has only grown since we lost her after eight weeks. The love and happiness that she brought me has far outweighed the hard parts. I remember talking with my father outside the delivery room shortly after Katie was born and telling him that no matter what happened in the future I had just witnessed the birth of my first child. I told him that now I was a father too, and that would last forever. That is something I will always have and will always be grateful for. Katie brought a lot of people together, from different backgrounds, families and religions. The community we lived in really reached out to us and our little girl. We would love to talk with other parents facing Trisomy 13 and offer any support we can. For support, please contact: Elisabeth Slotkin firstname.lastname@example.org (904) 730-9732 (904) 476-6673 (cell) Call any time! Steve Slotkin email@example.com (352) 478-1155 Back to Trisomy 13 You can read more about Trisomy 13 and receive incredible on-line support through the private message board on www.livingwithtrisomy13.org.