Mother of a little girl with rare condition says ‘her heart breaks’ when people do this to her daughter
When the little girl was born, she surprised her parents by arriving several weeks early. Her mom said that she was lucky to have shared her pregnancy with her sister, sister-in-law, and a couple of friends. They were all within weeks or months of each other. The lucky mom also said that it was amazing to have someone you can share your pregnancy pros and cons with. The brave mother also said that she had an amazing and easy pregnancy. She was considered high risk due to a heart-shaped uterus, which later we found out was not the case.
Elza also had an ultrasound monthly and because she was delivering Bella when she was 35, she had all the other prenatal testings. While she was working with her husband and was preparing the final touches to Bella’s room, her water broke – the baby was arriving a month early. After 12 hours of labor, the baby was born. She arrived weighing 5 and a half pounds. Upon her arrival, the mother reportedly noticed a really small folded ear. She then when I realized something was not right.
The mother reportedly said said: “Why isn’t anyone congratulating me? Why is my husband so confused and scared? Why can’t my mom look at me? Why did my doctor step out? Why are all these other people coming into my room?’ My room was silent. No one said a word. The silence tore me apart, it broke me, shattered my heart. I broke down, shaking, scared, confused, and lost. Writing this moment breaks me. With a heavy heart, I revisit these memories and remember my daughter’s arrival was not celebrated.”
Shortly after, the doctors told the parents that their baby had to be rushed to the NICU to be attached to IVs. Later that night, other specialists evaluated the baby and confirmed the two possible syndromes. They discussed options and informed the parents that a decision had to be made the following day.
The brave mom also said: “Things were a bit calmer the following day. Both our parents arrived early to be by our side. We had a major decision to make between two hospitals. We decided it would be best to call my best friend who was in the medical field. ‘Hi Noel, Bella is here and she’s in the NICU. She’s a little different and our journey is different but I need your help.’ Friends and family are everything. ‘That’s okay, Liz. I’ll be right there and don’t worry, everything is going to be fine.’
On Saturday, I walked to Bella’s room and saw all these wires all over her. She was so tiny and fragile. I’m sure she wondered why her little body couldn’t be left alone. I sang to her as she was being transferred to the incubator. We held her tiny hands and told her Mommy and Daddy will be right behind her. As soon as we arrived at the hospital, Bella’s medical journey began.
We had a special protocol to follow each time going in and out of the NICU. We were greeted by several specialists and neonatologists. Bella had to be assessed further with x-rays, exams, and evaluations. We had to leave Bella in the evenings at the hospital. It was so hard to manage motherhood, a new baby, a rare syndrome, pumping, and the daily information provided. When we finally got home, we walked into Bella’s room, held each other and cried. We never knew we would come home to an empty nest. I would wake up in the middle of the night to pump and was able to log into the NICU cameras to watch Bella. I connected with my daughter through media. That was my normal.
After about a week, Bella’s syndrome was determined to be Treacher Collins, a rare genetic condition which affects the full development of the facial bones. This syndrome is only present at birth and only 10% of the time can it be detected via ultrasound. Bella was born with microtia, hearing loss, small and recessed jaw, a small airway, and a hard cleft palate. Because of this, Bella went into her first surgery to receive a g-tube at only 7 pounds. A gastric tube is a way Bella is fed. Our journey in the NICU was 8 weeks long. The NICU was our home. Between my parents, Erik’s parents, and ourselves, Bella was entertained throughout the day. In addition to us, I was really lucky to have one of my amazing girlfriends who is a nurse at the hospital check on Bella throughout her shifts, especially in the evenings when I was already home.”
Few weeks later, the parents and the baby were ready to go home. Elza and her husnband were not only her parents but also her nurse. They have had many whirlwinds, including several emergency visits to the ER and choking situations while at home. The child is nearly 4 years old now and her mom shares regular updates about her condition. The child also had three major inpatient surgeries and one outpatient surgery. Most TCS babies have an average of 20 to 60 surgeries, if not more. Bella goes to occupational therapy, speech therapy, a music class for children with hearing loss, and early start with the school district.
The 38-year-old mom told the Mirror that ‘her heart breaks when her daughter smiles and says ‘hi’ to strangers who stare at her, only for them not to respond. She reportedly said: “We get stared at a lot, and now we notice her noticing it. She’s very observant. She will try to break the ice by saying “hi” several times but unfortunately she gets no response back. I pretend not to notice as she is young. My husband and I have decided to say something informative and non confrontational to anyone who stares.”