When the young girl was born, she came into the world several weeks earlier than expected, which took her parents by surprise. Her mother expressed her gratitude for the fact that she was able to share the news of her pregnancy with her sister, her sister-in-law, and a few close friends. Every single one of them was within a few weeks or months of one another. The fortunate mother also mentioned that it was wonderful to have someone with whom she could discuss the positives and negatives of her pregnancy. In addition, the courageous mother mentioned that she had an incredible and uncomplicated pregnancy. Due to the fact that she had a heart-shaped uterus, she was supposed to be at a high risk, but we later discovered that this was not the case.
In addition, Elza underwent an ultrasound on a monthly basis, and because she was going to give birth to Bella at the age of 35, she also underwent all of the other prenatal tests. During the time that she was working alongside her husband and putting the finishing touches on Bella’s room, she lost her water and discovered that the baby was going to arrive one month earlier than expected. It took twelve hours of labor for the baby to be delivered. Her weight was five and a half pounds when she arrived. It was said that the mother observed a very small folded ear when she arrived at the family home. It was then that I became aware that things was not quite right.
“Why isn’t anyone congratulating me?” the mother reportedly said, according to the statement. Why does my husband appear to be so panicked and perplexed? Why is it that my mother is unable to look at me? When did my physician leave the office? I don’t understand why all of these other folks are showing up in my room. There was complete silence in my room. Nobody made a single sound. It tore me apart, it crushed me, and it shattered my heart. The quiet tore me apart. During my breakdown, I was trembling, terrified, bewildered, and lost. This moment is breaking me to write about. Whenever I think back on these memories, I am overcome with sadness because I recall that the arrival of my daughter was not honored.
Shortly after that, the medical professionals informed the parents that their infant needed to be taken to the neonatal intensive care unit (NICU) as soon as possible so that they could be given intravenous lines. Late that evening, more physicians examined the infant and confirmed the two probable syndromes that were being considered. A decision had to be made the following day, and they notified the parents that they had discussed the many possibilities available to them.
In addition, the courageous mother stated that “things were a bit calmer the following day as well.” To be by our side, both of our parents arrived early in the morning. The choice between the two hospitals was a significant one for us to make. It was determined that the best course of action would be to phone my closest buddy who worked in the medical area. “Hello, Noel, Bella is here, and she is currently in the neonatal intensive care unit.” Despite the fact that she is a little bit different and that our trip is distinct, I need your assistance. What matters most are one’s family and friends. “It’s not a problem, Liz. Do not be concerned; I will be there in a moment, and everything is going to be all right.
While I was walking to Bella’s room on Saturday, I noticed that she was covered in cables all over her body. She had a very small and delicate frame. I have no doubt that she was perplexed as to why her youthful body could not be left alone. While she was being moved to the incubator, I sung to her until she was comfortable. While we were holding her tiny hands, we assured her that her mother and father would be just behind her. The medical ordeal that Bella was going through started as soon as we got at the hospital.
Going into and out of the Neonatal Intensive Care Unit (NICU) required us to adhere to a specific process. We were greeted by various doctors including neonatologists. A further evaluation of Bella was required, which included x-rays, examinations, and assessments. The nights were the only time we were able to leave Bella at the hospital. The demands of motherhood, including a new baby, a rare syndrome, pumping, and the daily information that was presented, were extremely challenging to manage. At long last, we arrived at our destination, and upon entering Bella’s chamber, we embraced one other and shed tears. We had no idea that when we returned home, we would find that our home was vacant. I was able to get into the NICU webcams and observe Bella even though I had to wake up in the middle of the night to make sure she was getting enough oxygen. Media allowed me to establish a connection with my daughter. It was my typical behavior.
Treacher Collins is an extremely uncommon genetic illness that interferes with the complete development of the facial bones. After approximately a week, it was discovered that Bella’s diagnosis belonged to this condition. The only time this syndrome is present is at birth, and ultrasound can only identify it ten percent of the time. Microtia, hearing loss, a small and sunken jaw, a small airway, and a hard cleft palate were all physical characteristics that Bella possessed at birth. In light of this, Bella underwent her initial surgical procedure to obtain a g-tube when she weighed only seven pounds. There is a stomach tube that is used to feed Bella. Our stay in the neonatal intensive care unit lasted for a total of eight weeks. Our home was the neonatal intensive care unit. Bella was kept occupied throughout the day by three different sets of parents: my parents, Erik’s parents, and ourselves. Aside from the two of us, I was extremely fortunate to have one of my wonderful buddies who works as a nurse at the hospital check on Bella throughout her shifts, particularly in the evenings when I was already at home.
Following a few weeks, the parents and the infant were prepared to return to their home. In addition to becoming her parents, Elza and her husband also served as her doctor and nurse. They have experienced a lot of whirlwinds, including multiple trips to the emergency room or circumstances in which they choked while they were at home. Although the child is almost four years old at this point, her mother continues to provide regular updates regarding her condition. At the same time, the youngster underwent one outpatient operation in addition to three significant inpatient procedures. There are an average of twenty to sixty surgical procedures performed on TCS newborns, if not more. As part of her early start with the school district, Bella participates in occupational therapy, speech therapy, and a music program designed specifically for children who have hearing loss.
In an interview with the Mirror, the mother, who is 38 years old, stated that “her heart breaks when her daughter smiles and says ‘hi’ to strangers who stare at her, only for them to take no action in response.” According to reports, she stated, “We get stared at quite frequently, and now we notice that she is noticing it.” She has a keen perceptiveness. She will make multiple attempts to break the ice by saying “hi,” but regrettably, she will not receive any reaction from the other person. Because she is still young, I act as if I wouldn’t notice. My husband and I have come to the conclusion that we will say something that is both instructive and non-confrontational to anyone who stares at us.
