I always wanted to be a mother. When I found out I was pregnant, I felt like the happiest woman in the world. I couldn’t stop overthinking about this little angle who would join our family and be so loved by my husband and me. The first three months were full of joy, interest, and dreams. We wondered if it would be a boy or a girl, what we would name them, and we talked to our baby every day, telling her that Mommy and Daddy were waiting. We were excited for every selections to see her on the ultrasound.
Everything changed in my fourth month. During a routine checkup, the doctor noticed something rare and asked me to have a 3D ultrasound to see more details. We went to a clinic prepared for detailed scans, but that day was shocking. The doctor told us that Helianny had severe defects in her hands, feet, eyes, lips, nose, skull, and brain. Only her other organs and spine were okay. Her condition was caused by Amniotic Band Syndrome, where string-like bands in the womb limited blood flow and affected her development. I cried without stopping, and the doctor suggested organ donation. It felt cruel. My husband and I left with broken hearts and shattered dreams.
After some time, my husband held me and whispered, “Let’s keep going. Do you want to?” I immediately said yes. We decided to give Helianny a chance, no matter what. We sought other medical opinions, but almost all doctors counseled ending the pregnancy. They foretold she would die in the womb or shortly after birth. I believe in God and clung to my faith. I told my OB-GYN firmly, “I will continue this pregnancy. Please manage it like any other.” And he did.
Against all odds, Helianny was born alive on August 21, 2015, at 39 weeks via C-section, weighing 10 pounds and measuring 18 inches. The first days were very hard. I could only see her after 24 hours, and the nurses whispered that I didn’t want her. I pushed through the pain and finally held her, touching her face, hands, and feet. She looked different, with three mind protrusions, no eyebrows, and very pronounced veins, but to me, she was beautiful.
Helianny came home after 13 days in observation. Living in Venezuela, we struggled to find medical help and the money for her first surgeries. Because of her breathing issues, we checked her sleep in shifts. Her first surgery to place a valve in her head was dangerous; the anesthesiologist didn’t believe she could survive. But I was confident, and she did. She later had surgeries for her clubfoot and lip. More processes are needed, but we’ve had to wait because of finances.
Helianny has taught us strength and patience. People sometimes stare at her in public, and it can be uncomfortable. I dream of the surgeries that will help others see her as I do—a beautiful little girl. She has her own personality. She loves water, music, and dogs, and she shows her love by touching our faces. She turned three in August, challenging all chances.
Now, she attends therapy and is improving. She’s learning to control her head more and making growth every day. The road ahead is long, but we will be by her side for everything she needs. Every child deserves a chance at life, and Helianny is no exclusion.
Despite the challenges, and even facing reproach online, we live a normal life. We include her in birthdays and social events, making sure she practices life fully. Through all the ups and downs, we feel blessed to be Helianny’s parents and thankful for every part and moment with her.
