Mom shares touching story of raising a daughter with Treacher Collins Syndrome

I was lucky to have shared my pregnancy with my sister, my sister-in-law and a couple of friends. We were all weeks or months apart. It was amazing to have someone to share the pros and cons of your pregnancy with.
Throughout our journey, I’ve learned a lot about life, aside from the fact that you can throw a great curveball on any given day. Sometimes we are ready for change and sometimes we are not.

Like most couples, the excitement of bringing our bundle of joy began to kick in as we got closer to our due date. The room was perfect and ready to receive our little one. Our families were excited and eager to see what we had created. It was so much fun to see what traits the babies shared with each parent. I had also heard many stories about breastfeeding and how difficult it can be. I really wanted to share a bond with my son, but I was also nervous about the changes to come.

I had an amazing and easy pregnancy. I was considered high risk due to a heart shaped uterus, which we later found out was not the case. I had a monthly ultrasound and since I was going to give birth to Bella when she was 35, I had all the other prenatal tests done.
Everything came back ‘normal’.

On the night of October 24, my husband was working late and I was putting the finishing touches on Bella’s bedroom 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 dad. Hi, Daddy, Mommy thinks I’m going to be early. She has a feeling that she won’t be pregnant for much longer. I can not wait to meet you. I love you daddy.’

On October 25, 2018, at 1:15 am, my water broke. Bella arrived a month early. I was frantic, since we hadn’t taken any classes (which I later learned you don’t really need). My bag was half packed, our car seat wasn’t installed yet, and my nails and hair were a mess. Not in the way I imagined she would put me into labor. We ended up calling my parents and together we ran to the hospital. The fun of work has begun!

Throughout my labor, I had to lie face down on my right side, as Bella’s heart rate would drop dramatically. (This later made sense, due to her small airways.) She was nauseated and sleepy from the epidural and oxytocin. When it was time to push, she would push and then she had to go back to my right side. I felt weird, confused and not excited. It seemed like a lot was going on. The NICU was already in my room, along with my mom, husband, midwife, and labor nurse. After pushing for about 30 minutes, we were informed that the baby was having difficulty getting out. My obstetrician was called, and along with everyone else, she was now in the room as well. I had to have two people to deliver Bella because of the shape of my pelvis. Excellent.

After 12 hours of labor, Bella entered our world. She arrived sunny side up, weighing in at 5 1/2 pounds. Upon her arrival, I noticed a very small bent ear. I was told that babies look weird as soon as they come out, so I didn’t think anything of it. She was so small and red and vulnerable. I was excited and ready to meet our little girl! I was smiling and anxiously waiting to pick up my baby when I realized something was wrong. Why is no one congratulating me? Why is my husband so confused and scared? Why can’t my mom look at me? Why did my doctor go out? Why are all these other people coming into my room? My room was silent. Nobody said a word. The silence tore me apart, broke me, broke my heart. I collapsed, shaking, scared, confused and lost. Writing this moment breaks me. With a heavy heart, I review these memories and remember that my daughter’s arrival was not celebrated.
Other specialists came and went taking notes. ‘What’s going on? What did I do wrong? Why are all these people invading our special moment?

I finally got to see Bella and… she looked “different”.

An experience that is supposed to be special, it was terrifying. The room was silently chaotic. My father came running in (still behind the curtain) yelling, “What’s going on?” My mother pulled herself together as best she could and informed my father, “Everything will be fine, but we don’t know much.”

These were the first words that came out. I don’t know why I don’t know why those specific words. I don’t even remember what she was feeling at the time. She looked at me and said, ‘Honey, don’t think about anything right now. Everything will be fine.

The doctors informed us that Bella needed to be rushed to the NICU for an IV and that my husband would follow her. He still hadn’t held my baby.

‘Wait!’ said. I want to hold my baby. They put Bella on my chest and she looked into my eyes with such sweetness. I’ll never forget that look, a look that said, ‘Mommy, I’m scared.’ It was also a look that brought me comfort.
About an hour later, I was able to reunite with my husband and baby. At the hospital where I gave birth, they make you press a button that plays a postpartum lullaby. As they took me to the NICU, they asked me to push the button. I didn’t want to I wasn’t celebrating I didn’t even know if my baby would ever come home or if she would ever be okay. As the lullaby played, I cried internally. I will never plan anything again. I felt that life let us down. Nothing mattered anymore. As messages from my friends started coming in, I started to get angry and angry. I didn’t reply to any of them and actually turned off my phone. It was unfair, I thought. They went home, held their babies, celebrated, and we didn’t even know what the future held.

I was finally able to connect with Bella and Erik. They gave us privacy so that Erik and I could bond with Bella, skin to skin.

‘Honey, I think I diagnosed our daughter,’ said my husband, ‘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 photos, researched and cried.
At midnight, we had to say good night to our little one to go back to our room. It was so hard to walk away from her. I felt we had to protect her. I wondered if she wondered why we couldn’t be with her. I wondered if she felt unwanted. When she sought my breast and I wasn’t allowed to nurse her, she tore me up inside. She was rejecting my son. Bella wanted to connect with mommy more, she wanted intimacy, she wanted to feel safe; she was hungry and she wanted to be fed. These were the things she couldn’t provide for him.

Once in our room, my husband and I went back to our feelings, talked some more, cried a lot more, kissed each other goodnight, and immersed ourselves in our own thoughts.

Things were a bit calmer the next day. Our parents arrived early to be by our side. We had to make an important decision between two hospitals: UCSF Children’s Benioff or Standford Children’s. With that in mind, we decided it would be best to call my best friend who was in the medical field. ‘Hello Noel, Bella is here and she is in the NICU. She’s a little different and our journey is different, but I need your help.” Friends and family are everything. She’s fine, Liz. I’ll be there and don’t worry, everything will be alright.
Noel got to us within 20 minutes of my phone call. After discussing our options, he called Kevin, who is a surgeon in our area, to help us with our decisions. Noel’s call provided us with connections to the best doctors and surgeons. Not an hour passed and I got a text from Carol, who heads the craniofacial department at Children’s. Our journey had begun and Bella’s town grew.

On Saturday, October 27, 2018, we were transferred to Children’s Benioff in Oakland. I walked into Bella’s room and saw all these wires everywhere. She was so small and fragile. I’m sure she wondered why her small frame couldn’t be left alone. I sang to her as she was transferred to the incubator. We took her little hands from her and told her that mom and dad would be right behind her.

As soon as we got to the hospital, Bella’s medical journey began.

We had a special protocol for her to follow every time she went in and out of the NICU. We were received by several specialists and neonatologists.

Bella had to be further evaluated with x-rays, exams and evaluations. We had to leave Bella in the afternoons at the hospital. It was very difficult to cope with motherhood, a new baby, a rare syndrome, the pumping and the daily information provided.

When we finally get home, we walk into Bella’s room, hug each other and cry. We never knew we’d be coming home to an empty nest. I woke up in the middle of the night to pump and was able to log into the NICU cameras to see Bella. I connected with my daughter through the media. That was my normal.