I have always dreamt of becoming a mother, and when I found out I was pregnant, I was overjoyed. The first three months of pregnancy were filled with excitement and wonder about our future child. We wondered if it would be a boy or a girl, what name we would choose, and so on.
Every day, my husband and I would tell our baby how eagerly we were awaiting their arrival. We were thrilled to attend monthly check-ups to monitor our baby’s growth and progress. However, everything changed during the fourth month of my pregnancy.
During a routine appointment, our OB-GYN noticed something unusual but didn’t provide further details. Instead, he recommended a 3D ultrasound to get a closer look at our baby’s anatomy. We scheduled the ultrasound at a clinic equipped for a comprehensive fetal analysis.
The day of the appointment arrived, and it was a long and exhausting one. That day, our world was turned upside down. We learned that our baby, whom we named Heliay, had severe deformities in her hands, feet, eyes, mouth, nose, and jaw. The remaining organs were unaffected. Heliay’s condition was attributed to Amniotic Band Syndrome, where string-like amniotic bands entangled her in the womb, disrupting her development.
As I sobbed uncontrollably, the doctor suggested that we consider terminating the pregnancy. At such a pivotal moment in our lives, the request felt incredibly insensitive. Despite the heartbreaking news, my husband and I experienced an indescribable sensation like none other.
After a long bout of crying, we locked eyes, embraced, and my husband whispered, “Let’s keep going.” Without hesitation, I replied, “Of course, we will.” We decided to continue the pregnancy, giving Heliay a chance at life. We explored alternative medical options, but the outlook kept getting worse. Most doctors recommended termination, believing that Heliay would either pass away in my womb or, if we were lucky, shortly after birth. My faith in God remained steadfast, and He granted my request.
On August 21, 2015, at 39 weeks gestation, Heliay was born via C-section, weighing 10 pounds and measuring 18 inches.
The initial days were challenging. Due to my condition, I could only see her after 24 hours. The nurses began spreading rumors that I didn’t want to see my own daughter and was rejecting her. Hurt by these comments, I decided to take some time to heal as I was in extreme pain. When I finally met Heliay, I gently stroked her face and massaged her hands and feet. I told her, “Your mother is here.” I acknowledge that her appearance may seem unusual to most people. Her head had three protrusions where her skull had not formed correctly. She had no eyebrows, and a thin veil of skin appeared like it could dissolve. Her eyes and nostrils were absent, and she couldn’t breathe through her nasal openings. In my eyes, she was beautiful.
After 13 days of observation, we were able to take Heliay home. It felt like we were standing at a crossroads, unsure of what lay ahead. We lived in Venezuela, a place where conditions were dire three years ago and have only worsened since. We needed medical assistance and the necessary facilities for her initial surgeries.
We had to monitor her sleep every night during her first few months of life due to her breathing difficulties. My husband, mother-in-law, and I worked in three-hour shifts, ready to assist her if needed. After a few months, it was time for her first surgery: the installation of a valve in her head to regulate the flow of cerebrospinal fluid. The same fear repeated, with the anesthesiologist doubting Heliay’s survival. But I was confident my daughter would come back to life, and the surgery was a success. Heliay didn’t disappoint. I am grateful to God because everything has gone smoothly so far. She has had two more surgeries to correct a clubfoot and repair her cleft lip. Due to financial constraints, we haven’t been able to proceed with more surgeries, including craniofacial reconstruction and eye prosthesis.
Every day, Heliay strives to be her best self. It’s challenging for her to feel comfortable when people in the street see her as different. To me, she’s a beautiful little girl. Those surgeries are what I dream of for people to see her the same way I do.
Of course, additional surgeries and therapy will improve her quality of life. She has a unique personality, enjoys the sound of water, gets tired when dogs bark, loves music, and has her own way of expressing emotions, like scratching. She even taught a 3-year-old girl to read, something no one believed possible. She keeps defying all odds. We often hear negative comments. I believe Heliay teaches us that life is precious but fleeting, and it’s our responsibility to make the most of it.
Heliay is currently undergoing therapy, and I’ve seen significant progress. She is getting better at controlling her head movements. The road ahead is long, but we are committed to standing by her side and providing everything she needs. My child deserves the same opportunities in life as anyone else. Sometimes, I wonder what would happen to her if we weren’t here, and I have to remind myself that the future is uncertain.
Unfortunately, many people judge her (and me). My response is that life can change in an instant, and one can find themselves entirely reliant on others. I ask, “Don’t we all deserve to live and be accepted?” Society preaches equality but rarely practices it for those who don’t fit the norm. Despite this, we strive to live a normal life and include Heliay in all our activities. We celebrate her birthdays and other special occasions with her. We are proud to be Heliay’s parents, despite the hardships and this long, challenging journey.
