‘Why isn’t anyone congratulating me? Sadly, my daughter’s arrival wasn’t celebrated…’

The entire pregnancy process took my husband and I around nine months. My anxiety and trepidation were beginning to grow. There are so many different feelings that one might experience when thinking about having children.

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I was fortunate to have my sister, sister-in-law, and a few girlfriends know about my pregnancy. We were all a few weeks or months apart from one another. Having someone to discuss the advantages and disadvantages of your pregnancy with was wonderful. 

Aside from the fact that life might throw a massive curveball at any time, our path has taught me a lot about life. We are not always ready for change, but we are sometimes.

Like other couples, as our due date approached, we began to feel the excitement of bringing our little one into the world. The space was ideal and prepared to receive our infant. Both our family and we were eager to show them what we had produced. Observing the characteristics the infants shared with each parent was so much joy. 

Additionally, I had heard a lot of tales about how challenging nursing can be. I was anxious about the upcoming changes as well as looking forward to developing a bond with my child.

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Pregnancy was wonderful and simple for me. We eventually learned that my heart-shaped uterus was not the reason I was deemed high risk. Because I gave birth to Bella when I was 35, I underwent all the necessary prenatal tests in addition to my monthly ultrasounds. Everything came back ‘normal.’

On the evening of October 24th, my husband was working late and I was preparing the final touches to Bella’s room and diaper bag. Right before I went to bed at 11:30, I texted a picture of my belly and a note from Bella to her daddy. ‘Hi, Daddy, Mommy thinks I’m going to come early. She has this feeling she’s not going to be pregnant much longer. I can’t wait to meet you. Love you, Daddy.’

On October 25, 2018, at 1:15 a.m., my water broke. Bella was arriving a month early. I was frantic, as we hadn’t taken any classes (which later I learned you really don’t need). My bag was half packed, our car seat not yet installed, and my nails and hair were a mess. Not the way I pictured I would go into labor. We ended up calling my parents and together rushed to the hospital. The fun of labor began!

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Bella’s pulse rate would rapidly drop throughout my labour, so I had to stay on my right side and be side prone. Due to her narrow airway, this later made sense. Due to the epidural and Pitocin, I felt sick and tired. I had to push when the time was right, then turn back to my right side. Strangeness, bafflement, and lack of excitement characterised my feelings. It appeared that a lot was going on.

My mother, husband, the delivery nurse, the midwife, and the NICU were already in my room. We learned the baby was having trouble exiting after about 30 minutes of pushing. After being paged, my OB doctor joined the rest of the group in the room. Due to the shape of my pelvis, I needed two persons to deliver Bella.

Bella finally entered our world after a 12-hour labour. She was five and a half pounds when she arrived sunny side up. I observed a fairly little folded ear when she arrived. Since I had heard that newborn babies have peculiar appearances, I didn’t pay it any attention. She was so little, so red, and so helpless. I was eager to meet our newborn girl and was prepared. I was grinning and looking forward to holding my newborn when I realised something was wrong.

Why aren’t there any congratulations for me? Why is my spouse feeling so uncertain and afraid? My mum won’t even look at me, why? My doctor left, but why? Why are so many more people entering my room? It was quiet in my room. Nobody made any noise. I was torn apart by the quiet; I was left broken and heartbroken. I started sobbing, trembling, afraid, perplexed, and lost. I’m in tears as I type this. I think back on these moments with sadness because I recall that my daughter’s birth was not commemorated.

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Other specialists entered and exited while taking notes. “What is happening? what went wrong with me? Why are so many people encroaching on our private moment? When I finally caught a sight of Bella, she appeared to be “different.” 

A remarkable event turned out to be unsettling. The space was utterly disorganised. ‘What is happening?’ my father yelled as he rushed in from behind the curtain. Things will be okay, but we don’t know much, my mum said my dad after gathering herself as much as she could.

‘Mom, can I have kids again?’

These were the initial words that were said. I have no idea why. I have no idea why those particular words. Even the emotions I was experiencing at that time escape my memory. ‘Sweetheart, don’t think about anything right now,’ she whispered as she turned to face me. Everything will turn out for the best.

Bella needed to be rushed to the NICU to be hooked up to IVs, and my husband would follow, the doctors informed us. I had yet to hold my child.

‘Wait!’ I said. ‘I want to hold my baby.’ They put Bella on my chest and she looked so softly into my eyes. I will never forget that look, a look that said, ‘Mommy I am scared.’ It was also a look that brought comfort to me.

No matter what happens, she will always be protected, I said to her. I watched as my husband and infant left the room while my mother remained behind with me. I had never felt so empty. Why us?

I was able to reconnect with my husband and child around an hour later. You are required to press a button in the hospital where I gave birth after delivery to hear a lullaby. I was instructed to press the button as I was being brought to the NICU. I was unwilling to. I wasn’t having a party. I had no idea when or even if my infant would return home or be alright.

I cried silently when the lullaby was playing. I’ll never make another preparation. I thought life had let us down. Nothing was important anymore.I became irate and enraged when messages from my girlfriends began to arrive. None of them received a response from me, and I even turned off my phone. I felt it was unjust. We had no idea what the future contained as they went home, cuddled their infants, and celebrated.

I was able to communicate with Bella and Erik at last. Erik and I were given our own space to connect with Bella on a skin-to-skin level.

‘Honey, I think I diagnosed our daughter,’ my husband said, ‘Well, there are two syndromes, however, one is worse than the other. Let’s hope it’s Treacher Collins.’ We read the article together, looked at pictures, researched, and cried.

We were fortunate to have an ENT from Stanford accessible that evening. She examined Bella and determined that the two potential disorders existed. We talked about our alternatives and were told that the choice needed to be made the following day.

We had to bid our young child goodnight at midnight and return to our room. It was quite difficult to leave her. I thought we had to keep her safe. I questioned whether she questioned our inability to accompany her. I questioned whether she felt unwelcome. 

I was torn apart internally when she leaned in towards my breast but I was forbidden from nursing her. I was turning my child away. Bella desired closer ties with her mother, as well as greater intimacy and a sense of security. She also required food to satisfy her hunger. These were the things that I was unable to provide her.

Once in our room, my husband and I circled back to our feelings, talked a bit more, cried a lot more, kissed goodnight, and went into our own thoughts.

The next day, things were a little bit more tranquil. Our parents both showed up early to be there for us. Between UCSF Children’s Benioff and Stanford Children’s, we had to make a significant choice. We felt it would be better to call my best friend who worked in the medical sector after taking that into consideration. 

Bella is present and in the NICU, “hi Noel.” Although our trip is different and she is a little different, I still need your assistance. Family and friends are everything. That’s all right, Liz. Don’t worry, I’ll be there immediately, and everything will be alright.

Within 20 minutes following my phone call, Noel arrived at our house. After going over our options, she summoned Kevin, a local surgeon, to help us make decisions. Noel’s phone call gave us access to the top surgeons and medical professionals. 

I got a text from Carol, who oversees the Children’s craniofacial department, in less than an hour. Bella’s settlement had expanded and our journey had started.

We were transported to Children’s Benioff in Oakland on Saturday, October 27, 2018. As I entered Bella’s room, I noticed that she was covered with wires. She was so little and vulnerable. She probably questioned why her tiny body couldn’t be left alone. 

As she was being moved to the incubator, I sung to her. We informed her as we held her little hands that her parents would be right behind her.

When we got to the hospital, Bella’s medical adventure started. When entering and leaving the NICU, we had to adhere to a specific process each time. Numerous doctors and neonatologists welcomed us.

Bella needed to undergo additional testing, including x-rays, tests, and evaluations. Bella had to be left at the hospital in the nights. Managing motherhood, a newborn, a rare syndrome, pumping, and the daily information presented was extremely difficult.

We entered Bella’s room when we at last arrived at our house, hugged each other, and started crying. We never anticipated returning home to an empty nest. I was able to get into the NICU cameras to view Bella when I would get up in the middle of the night to pump. Through media, I communicated with my daughter. My usual was like that.

After roughly a week, it was discovered that Bella had Treacher Collins syndrome, a rare genetic disorder that prevents the complete development of the facial bones. Ultrasound can only identify this syndrome 10% of the time and only when it is present at birth.

Bella was born with microtia, a hard cleft palate, a narrow airway, a small and sunken jaw, and hearing impairments. Bella underwent her first operation to have a g-tube as a result at just 7 pounds. Bella is fed via a stomach tube. Our stay in the NICU lasted eight weeks. Our home was the NICU.

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.

On December 8, 2018, after we were medically and properly trained to care for Bella, we were discharged to go home. My husband and I were not only her parents but also her nurse. We have had many whirlwinds, including several emergency visits to the ER and choking situations while at home.

We have come a long way, and I mean a really long way. I’m thankful for the training we received in the NICU, as it helped me save my daughter several times.

At the age of 16 months, Bella has undergone three significant inpatient procedures and one outpatient procedure. 

Most TCS babies undergo 20 to 60 procedures on average, if not more. Most of them have some form of hearing loss, however others have trachs to assist with breathing.

Bella attends early start with the school system, occupational therapy, speech therapy, and a music class for kids with hearing loss.

Although our path and daily lives are different, I wouldn’t trade it for anything. I’ve learned a lot from this entire process as a mother, sister, wife, friend, and acquaintance.

Because life can be unpredictable, there are moments when we are not ready for change. Life is brittle, lovely, and occasionally gloomy. 

I’m happy to be able to provide Bella the necessities of life. Isabella has a wide network of supporters, including friends, family, customers, and online users. It has been simpler to get used to our routine now that everyone is on our path.

Thank you for sharing your story! Bella is beautiful and special and so are you and your husband. Stay strong for your girl. 💕