When a woman gives birth to a child with Treacher-Collins syndrome, she says, “Our normal is different, but I wouldn’t alter it for the world.”

“‘We’re expectant!’ When planning a family, these are the words that everyone hopes to hear.

It took my spouse and I approximately nine months to conceive. I began to experience anxiety and nervousness. It’s incredible how many emotions one can experience when contemplating parenthood.

I was fortunate to share my pregnancy with my sister, sister-in-law, and a few acquaintances. We were all approximately weeks or months apart. It was wonderful to have someone with whom to discuss the pros and cons of pregnancy.

In addition to the fact that a significant curveball can be thrown on any given day, I have learned many things about life on our voyage. Occasionally we are prepared for change, and occasionally we are not.

As our due date approached, we, like most couples, began to anticipate the arrival of our little bundle of delight. The room was ideal and prepared to accommodate our infant. Our families were eager to see what we had created, and so were we. It was so entertaining to see what characteristics the infants share with each parent. I had also heard numerous accounts of how difficult breastfeeding can be. I anticipated forming a bond with my infant, but I was anxious about the upcoming changes.

I had a wonderful and simple pregnancy. The fact that my uterus was shaped like a heart led to the incorrect assumption that I was a high-risk pregnant woman. I had a monthly ultrasound and underwent all other prenatal testing because I was 35 years old when I gave birth to Bella.

Everything returned as “normal.”

On the evening of October 24th, while my husband worked late, I finished preparing Bella’s room and diaper pack. Before I went to bed at 11:30, I texted her father a photo of my pregnant abdomen and a note from Bella. “Hello, Papa. My mother believes I will arrive early. She has the impression that she won’t be expectant for much longer. I am excited to meet you. Love you, Papa.’

At 1:15 a.m. on October 25, 2018, my water broke. Bella arrived one month early. I was frantic because we hadn’t taken any classes (which I subsequently learned were unnecessary). My bag was only partially packed, our car seat was not yet installed, and my fingernails and hair were untidy. Not the way I anticipated giving birth. We ultimately called my parents and raced to the hospital together. The enjoyment of work began!

Bella’s pulse rate would significantly diminish during my labor, requiring me to lie on my right side. (This was later explained by her limited airway.) I was nauseated and drowsy due to the epidural and Pitocin. When the time came to push, I would push and then turn to my right. I felt odd, perplexed, and unenthusiastic. It appeared that a great deal was occurring. The NIU, along with my mother, husband, midwife, and delivery nurse, were already in my room. After approximately 30 minutes of straining, we were informed that the infant was having difficulty being born. My OB-GYN was summoned and, along with everyone else, he was now present in the room. Due to the curvature of my pelvis, Bella’s delivery required the assistance of two individuals. Great.

Bella entered the world after 12 hours of labor. She arrived weighing 5.5 ounces and sunny side up. Upon her arrival, I observed a tiny, curled ear. I had been informed that newborn infants appear strange, so I didn’t think anything of it. She was so diminutive, vulnerable, and red. I was eager and thrilled to meet our daughter. I was beaming and eagerly awaiting the birth of my child when I realized something was amiss. ‘Why isn’t anyone congratulating me? Why is my spouse so bewildered and terrified? Why does my mother not glance at me? Why did my physician leave? Why are so many individuals entering my room? My chamber was completely silence. Nobody spoke a word. It tore me apart, broke me, and devastated my heart. I broke down, trembling, terrified, perplexed, and lost. Writing about this moment breaks my heart. With a sorrowful heart, I recall these memories and recall that the birth of my daughter was not celebrated.

Other specialists entered and exited while taking notes. What is occurring? What did I do wrong? Why are so many individuals interrupting our intimate moment?’

I finally caught sight of Bella, and she appeared ‘different.’

An experience that was intended to be unique was terrifying. The room was tumultuous in silence. My father rushed in while still hiding behind the curtain and yelled, “What is going on?” My mother gathered herself as best she could and told my father, ‘Everything will be alright, but we don’t know much.’

“Mum, may I have children again?”

These were the initial remarks spoken. I have no idea why. I do not understand why those particular phrases. I cannot recall what I was experiencing at that time. She gazed at me and said, “Honey, don’t think about anything at the moment. Everything will work out in the end.

The physicians informed us that Bella must be hurried to the NIU to be connected to an intravenous line, and that my husband will follow. I had not yet held my infant.

‘Wait!’ I said. I desire to embrace my infant. They placed Bella on my chest, and she gazed into my eyes with such gentleness. I will never forget that expression, which conveyed, “Mother, I’m afraid,” It was also an appearance that provided me with solace.

I assured her that no matter what occurs, she will always be safe. My mother remained with me while my spouse and infant left the room. I had never felt so vacant. Why us?

Within an hour, I was reunited with my spouse and infant. At the hospital where I gave birth, you are required to press a button that plays a lullaby. While being wheeled to the NIU, I was instructed to press the trigger. I did not desire to. I was not rejoicing. I had no idea if my child would ever return home or if she would be alright. As the lullaby played, I shed silent tears. I will never again plan for anything. I felt like fate let us down. Nothing was relevant anymore. As messages from my companions began to arrive, I became furious and enraged. I did not reply to any of them, and I ultimately turned off my phone. I believed it was unjust. They were able to return home, embrace their infants, and celebrate, while we have no idea what our future contains.

I was able to communicate with Bella and Erik at last. We were given seclusion so that Erik and I could form a skin-to-skin bond with Bella.

“Honey, I believe I have diagnosed our daughter,” I told my husband. “There are two syndromes, but one is worse than the other.” We can only hope it’s Treacher Collins. Together, we read the article, viewed images, conducted research, and wept.

That evening, we were fortunate to have an E NT available from Stanford. She evaluated Bella and affirmed the presence of the two potential syndromes. The options were discussed, and we were informed that a decision was required the following day.

At twelve o’clock, we had to bid farewell to our infant before returning to our room. It was so difficult to separate from her. I felt as though we needed to protect her. I pondered if she questioned why we were unable to be with her. I questioned whether she felt undesirable. When she rooted for my breast and I was forbidden to breastfeed her, it tore me apart on the inside. I rejected my own offspring. Bella desired a deeper connection with her mother, intimacy, and a sense of security; she was famished and desired to be nourished. These were the items I was unable to give her.

Once in our room, my husband and I circled back to our emotions, talked a bit more, wept a lot more, kissed farewell, and retreated to our own thoughts.

The following day was somewhat less chaotic. Our parents both arrived early to be with us. We had to make an important decision between two hospitals: USF Children’s Benioff and Standford Children’s. We determined that it would be best to contact my closest friend who worked in the medical profession. “Hello Noel, Bella is present and a member of the NIU. She is a little bit distinctive, and so is our voyage, but I need your assistance.’ Friends and family are indispensable. ‘That’s alright, Liz. I’ll be there shortly, and everything is going to be great.’

Noel arrived within 20 minutes of receiving my phone call. After discussing our options, she contacted Kevin, a local surgeon, to help us make decisions. Noel’s phone call connected us with the finest physicians and surgeons. I received a text from Carol, who manages the craniofacial department at Children’s, in less than an hour. Our journey had begun and Bella’s village grew.

On Saturday, October 27, 2018, we were transferred to Oakland’s Children’s Benioff. I entered Bella’s chamber and noticed that she was covered with cables. She was so delicate and small. I’m certain she questioned why her tiny body couldn’t be left alone. As she was being transferred to the incubator, I serenaded her with a song. We held her tiny hands and told her that Mother and Daddy will be directly behind her.

Bella’s medical treatment began as soon as we arrived at the hospital.

Each time we entered or exited the NIU, we had to observe a specific protocol. Several specialists and neonatologists greeted us.

Bella required additional x-rays, examinations, and evaluations. Evenings required us to abandon Bella at the hospital. It was extremely difficult to balance motherhood, a newborn, a rare syndrome, breast-feeding, and the daily information provided.

When we eventually arrived home, we entered Bella’s bedroom, held each other, and wept. We had no idea that we would return home to a deserted residence. I would wake up in the middle of the night to pump and was able to monitor Bella through the NIU cameras. I communicated with my daughter via electronic media. That was my standard.

After approximately a week, Bella’s syndrome was identified as Treacher-Collins, an uncommon genetic condition that affects facial bone development. This syndrome is only present at birth, and ultrasound detection is only 10% accurate.

Bella was born with microtia, hearing impairment, a small, receded mandible, a tiny airway, and a hard cleft palate. Bella underwent her first surgery to receive a g-tube when she weighed only 7 pounds. A gastric catheter is used to feed Bella. Our voyage in the NIU lasted eight weeks. We called the NIU our home. Bella was entertained throughout the entire day by my parents, Erik’s parents, and ourselves. In addition to my husband and I, I was fortunate to have one of my incredible friends who is a hospital nurse check on Bella during her shifts, particularly in the evenings when I was already at home.

On December 8, 2018, we were sent home after receiving medical and appropriate training to care for Bella. We were not only her parents, but also her caregivers. We have experienced numerous whirlwinds, including multiple emergency room visits and choking incidents at home.

We have traveled a great distance, and I do mean a great distance. Thanks to the training we received in the NIU, I was able to save my daughter on multiple occasions.

At the age of 16 months, Bella has undergone three significant inpatient surgeries and one outpatient procedure. The majority of TS infants undergo an average of 20 to 60 surgeries, if not more. Some of them have trachs to help them breathe, but nearly all of them have hearing loss. Bella participates in occupational therapy, speech therapy, a music class for children with hearing loss, and the school district’s early start program. Our journey and our daily lives are distinct, but I wouldn’t change a thing. As a mother, sister, wife, friend, and acquaintance, I have learned so much from this experience.

Life is unpredictable, and we are not always ready for change. Life is fragile, gorgeous, and occasionally gloomy. I am thankful to be able to provide Bella with the necessities of existence. Isabella has an extensive network of support, including friends, family, clients, and social media. With everyone on our voyage, adjusting to our normal has been simpler.”

Eliza J. submitted this story to Value What Matters. Their voyage can be followed on Instagram. Do you have a similar experience? Please share your significant journey with us. Please submit your own work here. Subscribing to our free email newsletter for our best articles and YouTube for our best videos is highly recommended.