“Why isn’t anyone saying congratulations to me? Unfortunately, my daughter’s arrival wasn’t celebrated…”

Eliza Bahneman and her husband’s lives changed a lot on October 25, 2018, when their daughter Bella was born.

Bella surprised them by arriving a few weeks early, but she was a precious gift. Saying “We are pregnant!” is something everyone likes to hear when deciding to start a family.

The whole pregnancy took about nine months, and Eliza was starting to feel anxious and nervous. Thinking about having children brings up many different feelings.

 

I was lucky to have my sister, sister-in-law, and a few friends who knew about my pregnancy. We were all expecting around the same time, so it was great to have someone to talk to about the ups and downs of being pregnant.

Life can be unpredictable, and going through this experience taught me a lot. Change doesn’t always come when we’re ready, but sometimes it happens.

As our due date got closer, my husband and I were getting really excited about welcoming our baby. We had everything set up and were eager to introduce our little one to our family. It was so much fun to see the traits our baby inherited from each of us.

I had heard stories about how challenging breastfeeding could be, so I was a bit nervous about that. But I was also looking forward to creating a special bond with my child.

My pregnancy was smooth and enjoyable. We later found out that my heart-shaped uterus wasn’t the reason I was considered high risk. Because I gave birth to Bella at 35, I had all the necessary tests and ultrasounds, and everything turned out ‘normal.’

 

On the night of October 24th, my husband was working late, and I was getting Bella’s room and diaper bag ready. Before going to bed at 11:30, I sent a text to my husband with a picture of my belly and a note from Bella saying she might come early. I was feeling like I wouldn’t be pregnant much longer.

On October 25, 2018, at 1:15 a.m., my water broke, and Bella was coming a month early. It was chaotic because we hadn’t taken any classes, our bags weren’t fully packed, the car seat wasn’t installed, and I wasn’t exactly prepared. We called my parents, and we all rushed to the hospital, and that’s when the labor adventure began!

During labor, Bella’s pulse rate would drop, so I had to stay on my right side. Due to her narrow airway, this made sense later. Because of the epidural and Pitocin, I felt sick and tired. I had to push at the right time, then turn to my right side. It was a bit confusing and not as exciting as I thought it would be.

My mom, husband, delivery nurse, midwife, and NICU were in the room. After 30 minutes of pushing, we learned Bella was having trouble coming out, so my OB doctor joined the group. Because of the shape of my pelvis, two people were needed to deliver Bella.

After a 12-hour labor, Bella finally arrived, weighing five and a half pounds, and she was sunny side up. I noticed a small folded ear but didn’t think much of it since I knew newborns can look different. She was tiny, red, and helpless. I was excited to meet her, but then I realized something was wrong.

No one was congratulating me, my husband seemed unsure and scared, my mom wouldn’t look at me, and the doctor left. More people kept coming into the room, and it got really quiet. I felt torn apart, broken, and heartbroken. I started crying, trembling, afraid, confused, and lost. I’m still sad when I think about it because my daughter’s birth wasn’t celebrated.

 

 

More doctors came in and out, writing things down. I was confused, wondering what went wrong. Why were so many people in our private moment? When I finally saw Bella, she looked “different.”

What should have been a special moment felt chaotic. “What’s happening?” my dad shouted as he rushed in. My mom, trying to stay calm, said things would be okay, but we didn’t know much.

“Mom, can I have kids again?” were the first words I said. I don’t know why. I don’t even remember what I was feeling at that moment. “Sweetheart, don’t think about anything right now,” she whispered, t

 

The doctors told us that Bella had to go to the NICU (a special baby care unit) and my husband would go with her. I hadn’t even held my baby yet.

“Wait!” I said. “I want to hold my baby.” They put Bella on my chest, and she looked into my eyes. I’ll never forget that look, like she was saying, “Mommy, I am scared.” But it also brought me comfort.

I told her that no matter what happens, she’ll always be protected. They took my husband and the baby out of the room, and my mom stayed with me. I felt so empty and wondered, “Why us?”

About an hour later, I got to see my husband and baby again. In the hospital, you’re supposed to press a button after giving birth to hear a lullaby. I was told to press it as I was taken to the NICU. I didn’t want to. It wasn’t a happy moment for me. I didn’t know when or if my baby would come home or be okay.

 

 

I cried quietly when the lullaby played. I felt like I couldn’t prepare for anything anymore. It seemed like life had let us down, and nothing seemed important.

I got angry when messages from my girlfriends came in. I didn’t respond to any of them, and I even turned off my phone. It felt unfair. They were going home to be with their babies and celebrating, while we had no idea what the future held.

Finally, I could talk to Bella and Erik. Erik and I got a special space to connect with Bella by holding her against our skin.

“Honey, I think I figured out what our daughter has,” my husband said. “There are two possibilities, but one is worse than the other. Let’s hope it’s Treacher Collins.” We read an article together, looked at pictures, did some research, and we cried together.

 

 

 

We were lucky to have a doctor from Stanford who specializes in ears, nose, and throat (ENT) available that evening. She checked Bella and found that she might have one of two disorders. We discussed our options and were told we had to make a decision the next day.

At midnight, we had to say goodnight to our little one and go back to our room. It was really hard to leave her. I worried if she wondered why we couldn’t stay with her or if she felt unwelcome.

It tore me apart when she tried to move towards my breast, but I couldn’t nurse her. I had to turn her away. Bella wanted to be close to her mom, feel more secure, and get the food she needed. Unfortunately, I couldn’t provide those things for her.

 

 

After we went back to our room, my husband and I talked about our feelings, shed more tears, said goodnight with a kiss, and each went into our own thoughts.

The next day, things were a bit calmer. Our parents came early to support us. We had to make a big decision between UCSF Children’s Benioff and Stanford Children’s. Considering this, we thought it would be a good idea to call my best friend who works in the medical field.

Bella is in the NICU, and I reached out to my friend, saying, “Hi Noel.” Even though our journey is different and she’s a little different, I still need your help. Family and friends mean everything. “That’s okay, Liz. Don’t worry, I’ll be there right away, and everything will be alright.”

 

 

Within 20 minutes of calling Noel, she arrived at our house. After discussing our options, she called Kevin, a local surgeon, to help us decide. Noel’s connections gave us access to top surgeons and medical experts.

Less than an hour later, I received a text from Carol, who oversees the Children’s craniofacial department. Bella’s situation had caught her attention, and our journey officially began.

On Saturday, October 27, 2018, we were taken to Children’s Benioff in Oakland. When I entered Bella’s room, I saw that she was covered in wires. She was so small and fragile. I wondered if she was questioning why her tiny body couldn’t be left alone.

 

 

As she was taken to the incubator, I sang to her. We assured her, holding her tiny hands, that we would be right there with her.

At the hospital, Bella’s medical journey began. Every time we went in or out of the NICU, we had to follow a specific procedure. Many doctors and neonatologists greeted us warmly.

 

 

Bella had to go through more tests like x-rays and evaluations. She had to stay at the hospital at night. Juggling being a mom, taking care of a newborn, dealing with a rare syndrome, pumping, and handling all the daily information was really tough.

When we finally got back home, we went into Bella’s room, hugged each other, and started crying. We never expected to come back to an empty house. At night, when I woke up to pump, I could see Bella through the NICU cameras. I communicated with my daughter through the screen. That became my routine.

 

About a week later, we found out that Bella has Treacher Collins syndrome, a rare genetic condition that affects how the face bones develop. Ultrasound can only detect this syndrome about 10% of the time and only when the baby is born.

Bella was born with microtia, a hard cleft palate, a small and sunken jaw, and hearing problems. She had her first operation to get a g-tube at just 7 pounds, which means she’s fed through a tube in her stomach. We stayed in the NICU for eight weeks, and during that time, the NICU became our home.

Throughout the day, Bella was surrounded by our parents and Erik’s parents. I was fortunate to have a wonderful friend who is a nurse at the hospital check on Bella during her shifts, especially in the evenings when I was at home.

On December 8, 2018, after we were trained to take care of Bella, we were allowed to go home. My husband and I became not only her parents but also her nurses. We’ve faced many challenges, including emergency visits to the ER and situations where Bella choked at home.

We’ve come a long way, and I mean a really long way. The training we got in the NICU helped me save my daughter several times. At 16 months old, Bella has had three significant inpatient procedures and one outpatient procedure.

Most kids with Treacher Collins syndrome have many procedures, usually between 20 to 60 or even more. Many of them have some hearing loss, and some even need trachs to help with breathing.

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

Even though our life is different, I wouldn’t change it for anything. I’ve learned a lot from this experience as a mother, sister, wife, friend, and acquaintance.

Life can be unpredictable, and sometimes we’re not ready for change. Life is fragile, beautiful, and sometimes sad.

I’m glad I can provide Bella with what she needs. Isabella has a big network of supporters, including friends, family, customers, and online users. It’s easier to settle into 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. 💕