“I’ve always wanted to be a mother,” she says. I was the happiest woman on the planet when I found out I was pregnant. I couldn’t stop thinking about the new addition to our family, who would be adored by both my husband and me. The first three months of pregnancy were filled with delight, curiosity, and a lot of wondering: whether the baby would be a boy or a girl, what his or her name would be, and so on. Every day, we used to call our kid and tell her that Daddy and Mommy were waiting for her. We were ecstatic to go to her monthly consultations and watch the ultrasounds of her development when I was in my fourth month of pregnancy; that all changed.
During that appointment, the OB-GYN noticed something unusual, but he didn’t tell us what it was; instead, he wanted me to perform a 3D ultrasound so he could examine the baby’s anatomy in greater depth. We made an appointment at a clinic with the necessary tools to thoroughly study a fetus’ organs and physiognomy. When the time came to go to the consultation, we were nervous and anxious. That day was awful… we learned that Helianny’s hands, feet, eyes, lips, nose, skull, and brain were all deformed. Only her other organs and her spinal column were unaffected. Amniotic Band Syndrome was the cause of her condition. In the womb, she became caught in string-like amniotic bands. Her blood supply was constricted, and her development was hampered as a result. While I was sobbing uncontrollably, the doctor offered that she donate her organs. At such a horrible time in our life, it seemed cruel of her to suggest that. Our hearts were torn, and our hopes were shattered as we exited that office. My spouse and I experienced an unexplainable pain beyond anything we’d ever experienced before.
We peered into one other’s eyes after crying for a long time; we hugged, and my husband muttered in my ear, ‘Let’s keep going.’ ‘Would you like to?’ Yes, of course, I wanted to, I informed him right away. We decided to keep the pregnancy because we wanted to give Helianny a chance. We began seeking other medical opinions almost immediately, but the news only worsened. Almost all of the physicians recommended terminating the pregnancy since they believed it would be futile to continue because Helianny would either die in my womb or if we were lucky, be born alive but die soon after birth. I’ve always believed in God and held fast to my unwavering faith. I returned to my OB-GYN and stated unequivocally, ‘I will continue this pregnancy; please manage it as any other,’ and he did what I requested.
Helianny was born alive on August 21, 2015, at 39 weeks, through C-section, weighing 10 pounds and measuring 18 inches, despite all odds.
The first several days were quite challenging. I was only allowed to see her after 24 hours due to my health. The nurses began muttering to each other that I didn’t want to see my daughter and that I was rejecting her. I decided to get up after hearing such remarks, even though I was in excruciating pain. I stroked Helianny’s cheeks and caressed her hands and feet when I first saw her. ‘Your mother is here,’ I told her. Most people, I concede, could be taken aback by her appearance. Her skull was not correctly formed, resulting in three protrusions on her head. Helianny lacked brows and had large, bulging veins on her forehead. Her eyes and nose were missing, and she could only breathe through two nasal holes. She was, nonetheless, lovely in her own right to me.
After 13 days of supervision, Helianny returned home with her father and me. I felt like I was at a fork in the road, with no idea where to go next and no one to guide me. To make matters worse, I reside in Venezuela, where the situation was terrible even three years ago and has only gotten worse. We had a difficult time obtaining medical assistance and the financial means required to complete her initial set of surgery.
We had to monitor her sleep every night for the first few months of her infancy because of her breathing concerns. In case Helianny needed assistance, my husband, mother-in-law, and I took three-hour shifts. After a few months, she was ready for her first intervention (installing the valve in her head to control fluid in her brain). The anesthesiologist indicated she didn’t think Helianny would survive the operation, and the tale repeated itself. But I had faith in my daughter’s survival, and Helianny did not let me down; the surgery was a success. I’m grateful to God since everything has worked out thus far. She also had two more procedures to address a clubfoot and relax her lip. Helianny needs additional procedures (craniofacial reconstruction, eye prosthesis, and nasal pyramid, among others), but we have had to postpone them owing to a lack of financial resources.
Helianny has taught us to be brave and to strive for improvement daily. When people stare at us in the street and regard her as an alien, it’s difficult not to feel uneasy. That’s why I fantasize about those operations, so people can see her the way I do, as a lovely little girl.
Of course, other procedures and rehabilitation will help improve her quality of life. I want others to realize that she is a unique individual. She like the sound of water, dogs barking make her laugh, she enjoys listening to music, and she has her way of expressing her love for us, such as touching our faces when we speak to her. In August, she turned three years old, which no one could have predicted. She continues to defy all odds. We grumble about nonsense all the time, and I suppose Helianny tells us that life is lovely but fleeting, and it is up to us to make the most of it.
Helianny is now attending therapy, and I’ve noticed a significant improvement. She’s lately regained some control over her head. I realize the road ahead is long, but we are willing to stand by her side and do everything it takes to ensure her safety. My tiny one has the right to an opportunity in life, just like the rest of us. I often wonder what will happen to her if we are no longer here, and I have to remind myself that the future is unpredictable.
Unfortunately, many people insult her (and me) online. Still, I respond that circumstances may change in a flash, and you can find yourself in a situation where you are entirely reliant on others. ‘Do you not deserve to live any longer, then?’ I ask. Society loves to preach equality, but it rarely applies in real life if you are not a “normal” person. Despite this, we try to live everyday life and include Helianny in everything. We accompany her to birthday celebrations and other social gatherings. We consider ourselves fortunate to be Helianny’s parents, despite all of the ups and downs and despite this long, arduous road.”
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