I’ve always wanted to have children of my own. When I found out I was pregnant, I was the happiest woman alive. I could not get my thoughts out of my head about the new baby that my husband and I would cherish.
Throughout the first three months of pregnancy, there was a lot of wondering, curiosity, and excitement about the baby’s identity—such as whether it would be a boy or a girl and what their name would be. Every day we would tell our daughter that Mommy and Daddy could not wait for her to arrive. It was a pleasure to witness her development at monthly sessions. In the fourth month of my pregnancy, this changed.
The OB-GYN saw something abnormal at that appointment, but he did not provide me any more details. Rather than that, he requested me to perform a 3D ultrasound so he could look more closely at the baby’s anatomy. We made an appointment with a clinic equipped with all the tools required to do a thorough examination of the organs and physiology of a fetus.
We were wet and tired when it was time to head to the convention. It was a horrible day. Heliay had malformed hands, feet, eyes, mouth, nose, ear, and jaw, as we found out. Her colon and other organs were both healthy. Her illness was brought on by amniotic band syndrome. Her amniotic bands were wrapped in her when she was still in the womb. This had an effect on her growth and changed her menstrual cycle.
As I started crying hysterically, the doctor advised her to give her organs. It felt very rude of her to ask at this very important time in our lives. With our hopes still intact and our hearts full, we exited that office. My partner and I felt something that neither of us had ever felt before—an inexplicable thrill.
We hugged and stared into each other’s eyes after a protracted period of crying, and my husband muttered, “Let’s keep going.” Do you think this would be interesting? I said right away, “Of course, I will.” We decided to give Heliay a chance by carrying the pregnancy to term. We looked for other medical options right away, but the situation grew worse. Because they thought Heliay would either die in my womb or, in the best case scenario, be delivered alive but pass away soon after, almost every doctor advised ending the pregnancy. I have stayed loyal to my core beliefs and have always believed in God. He fulfilled my desire.
Her father and I were allowed to take Heliay home after we had been under supervision for 13 days. I had the impression that I was at a loss for what to do next. Furthermore, the conditions in Venezuela, where I live, were dire three years ago and have only gotten worse since. We needed the facilities and medical support to finish her first round of procedures.
Her respiratory issues throughout her first few months of life required us to keep an eye on her every night. My husband, mother-in-law, and I worked three-hour shifts in case Heliay needed help. After a few months, it was time for her first intervention—the implantation of the valve in her head to regulate her airway flow. The anesthesiologist voiced uncertainty that Heliay would survive this operation when the same story was told again. However, I had faith that my baby would survive, and the procedure went well; Heliay did not let me down. I thank God that everything has gone nicely up to this point. To alleviate her lip and treat a clubfoot, she had two further surgeries. Lack of funding has prevented us from doing additional surgeries on Heliay, including nasal pyramid, eye prosthesis, and craniofacial reconstruction.
Heliay tries to be the best version of herself every day. She finds it hard to relax when random strangers on the street think she’s strange. I dream about those procedures so they can view her the way I do—as a gorgeous little girl.
Of course, more surgeries and recovery will help to improve her quality of life. I want everyone to understand that she is a unique person. She likes the sound of running water, she gets tired of dogs barking, she likes to listen to music, and she uses actions like scratching or our words to express her feelings. Her ability to teach sign language to a three-year-old daughter surprised everyone. She continues to overcome every challenge. We are always criticizing each other. In my opinion, Heliay imparts to us the lesson that life is fleeting yet valuable, and it is our duty to fully enjoy it.
Heliay is receiving therapy right now, and I’ve noticed significant progress. She’s becoming better at controlling her head lately. I know it’s a long road ahead, but we’re ready to support her and do whatever it takes to make sure she’s safe. My child is entitled to the same opportunities in life as all of us. I often wonder what would happen to her if we were not here, and I constantly have to remind myself that things can change at any time.
Regretfully, a lot of people make fun of her and me, but I reply that anything may happen in a second and you could end up totally reliant on other people. “Do you not deserve to live longer?” I ask. Though equality is something that society aspires to, if you are not “normal,” it is rarely put into effect. Despite this, we make an effort to lead regular lives and involve Heliay in all of them. We go to her birthday celebrations and other important events. Despite the highs and lows and this protracted, difficult road, we are thrilled to be Heliay’s parents.
Soleays Arolia Lgo Estrada from San Cristóbal, Venezuela donated this story to Love What Matters. You may follow them at @jorey on Instagram. To get our top stories, submit your own article here and subscribe to our free e-newsletter.
