The arrival of Eliza Bahneman’s daughter Bella on October 25, 2018, brought about a sea change in both Eliza and her husband’s lives.
Not only did Bella shock her parents by showing up a few weeks earlier than expected, but she also shocked them by appearing in front of them as one of the rarest jewels you can find.
‘We’re expecting!’ When it comes to making family planning choices, these are the words that everyone wishes to hear. It took my husband and me close to a year to finally succeed in getting pregnant. I was beginning to get feelings of anxiety and nervousness. Its crazy how many different emotions can arise when contemplating starting a family.
I am fortunate to have had the company of my sister, my sister-in-law, and a few close girlfriends throughout my pregnancy. We had just separated by a few short weeks or months. It was beautiful to have someone you could discuss the advantages and disadvantages of pregnancy with.
A significant curveball can be thrown on any given day, which is just one of the many things about life that I have learnt thanks to this trip, which has also taught me many other things. There are times when we are ready for change and other times when we are not.
As our due date drew nearer, just like it does for most couples, we started becoming excited about the prospect of welcoming our little bundle of joy into the world. The nursery was spotless and completely ready for the arrival of our little one. Everyone in our families was thrilled, and we couldn’t wait to show them what we had developed. It was much fun to observe the newborns’ characteristics inherited from each parent. In addition, I had heard a great deal of information regarding nursing and how challenging it may be. Although I was excited to form a connection with my child, I was also concerned about the upcoming shifts in our relationship.
My pregnancy was wonderful and quite straightforward. I learned I had a high-risk pregnancy since my uterus was in the shape of a heart, but subsequently, we discovered this was not the case. In addition to having monthly ultrasounds, I also underwent all the additional prenatal tests because I was going to have Bella when I was 35.
The findings of the examination were described as “normal.”
On the evening of October 24, my husband had to stay at work late, and I was finishing up putting the finishing touches on Bella’s nursery and her diaper bag. During this time, our daughter was just a few hours old. At 11:30, just before I went to bed for the night, I sent a picture of my pregnant belly along with a note Bella had written to the man who would become her future husband one day. “Hey, Daddy! My mother sneaks into suspicion that I’ll arrive a tad bit earlier than she anticipated.” After hearing today, she sneaks into suspicion that she won’t be pregnant much longer. I can’t believe we haven’t met yet! Love you, Daddy.’
On the morning of October 25, 2018, at 1:15 a.m., my water broke, which was the day I gave birth. It had been a month since doctors checked in on Bella. I was stressed because we hadn’t attended any classes (which, as I would find out later, aren’t required in any case). My bag was only partially packed, our car seat had not yet been installed, and my fingernails and hair were in a haphazard state. I was running late. The delivery of my child was nothing at all what I had pictured it would be. In the end, we concluded that we needed to contact my parents, and all three of us hastened to the hospital together. The beginning of the pleasure that will make you work!
I needed to maintain the side-prone position on my right side during the entire labour process because Bella’s pulse rate would decrease dramatically at specific points during the process. (It was explained in a subsequent explanation that this resulted from her limited airway.) Both the epidural and the Pitocin gave me a drowsy and queasy feeling during the labour process. I would press forward until it was my turn to turn to my right side, and then I would push forward once more. I did not experience any enthusiasm, unusual feelings, or mental clarity at all. It seemed as though several different things were going on at the same time. The neonatal intensive care unit was already present in my room, in addition to my mother, my husband, the midwife who assisted in the delivery, and the delivery nurse. After about half an hour of pushing, the doctor informed us that the baby was having trouble escaping the delivery canal. This came after we had been pushing for about that long. My OB-GYN was called, and immediately after receiving the page, he entered the examination room to join the other medical professionals who were already there. Because of the configuration of my pelvis, I needed the assistance of not one but two persons in order to give birth to Bella. Great.
After what seemed like an eternity, Bella was delivered after her mother had been in labour for a full day. She showed up there with the sun on her face and weighed five and a half pounds when she got there. As soon as she came, I saw that one of her very small ears was folded behind her head. At the time, I didn’t give it much attention because someone had told me that newborn infants right after birth seemed weird, so I assumed this was the case. She appeared to be in poor health, and the colour of her face flushed with rage. My excitement was out of control, and I couldn’t wait to get my hands on our new little girl. When I knew that something wasn’t quite right, I eagerly anticipated the day I would finally be able to hold my baby and smile simultaneously. She yelled, “Why is nobody congratulating me?” in response to the silence. Why does it seem like my husband is shaking with fear and has no idea what’s going on? I don’t know why my mother won’t look at me, and it baffles me. I’m confused as to why my doctor left without saying anything. I don’t understand why so many other people are coming into my room. My room had an eerily peaceful atmosphere. There was no sound to be heard. It was the silence that, in the end, tore me to pieces, left me feeling hopeless, and shattered my heart. I was completely incapable of keeping it together and began to shake. I, too, was in a state of complete confusion and disorientation. The mere contemplation of this particular second gives me shivers. When I think about these memories, it causes a terrible feeling in my chest because it brings to mind the fact that no one acknowledged the birth of my daughter.
Other specialists came and went while taking notes on their computers. “What exactly is going on here? What did I do wrong? Why are there so many people interrupting our private time together?’
When I did finally catch a glance of Bella, I noticed that she had a “different” appearance.
A terrifying feeling was evoked by something that was meant to be a one-of-a-kind encounter. The place was filled with hushed disorder. My father burst in a while, still hiding behind the curtain, and said, “What the heck is going on?” My mother found as much information as possible and told my father, “Things will be okay, but we don’t know much.” She had done all that she could.
“Mom, are you sure I can have children again?”
This was the first thing that came out of my mouth. I can’t explain why that is. I am unable to explain why those particular terms. I have absolutely no recollection of the emotions that I was experiencing at that very time. She gave me a kind smile and then added, “Sweetheart, don’t worry about anything right now.” Everything is going to be the best.
The physicians advised us that Bella needed to be sent to the NICU in order to have IVs inserted, and my husband would accompany her there. I hadn’t yet got the chance to hold my baby.
‘Wait!’ I said. I really need to hold my baby. After that, they placed Bella on my chest, and she stared ever-so-gently into my eyes. I’ll never forget that expression; it was a look that shouted, “Mommy, I’m terrified.” Furthermore, it was a glance that put me at rest.
I whispered to her that she would always be safe, no matter what the future held for her. My mother remained behind to be with me, and I watched as my husband and child exited the room. I had never felt so empty. Why us?
After waiting for over an hour, I finally found my way back to my spouse and our child. After giving birth in the hospital where I did, they make you press a button that starts playing a lullaby for the new mother. I was urged to press the button as I was being taken into the neonatal intensive care unit (NICU). It was against my will. I wasn’t in a celebratory mood. I had no idea when my kid would return or if she would ever be alright. I didn’t even know if she would ever come home. I found myself crying quietly as the lullaby played. Never again will I make preparations for anything. I felt like life failed us. Nothing was important anymore. As texts from my girlfriends began arriving, I became more infuriated and furious. I did not get back to any of them, so I turned off my phone to avoid responding to them. In my opinion, it was not fair. They were allowed to return home, cuddle their infants, and rejoice while we were kept in the dark about our future.
I was at last able to establish communication with Bella and Erik. We were granted seclusion so that Erik and I could develop a skin-to-skin connection with Bella.
“Honey, I believe I diagnosed our kid,” I told my husband. “Well, there are two syndromes. However, one is worse than the other,” he said. “Well, I think I diagnosed our daughter.” Let’s keep our fingers crossed that it’s Treacher Collins.’ Together, we shed tears while reading the story, looking at the photographs, and doing research.
That evening, we were quite fortunate to have access to a Standford ENT who was accessible. After examining Bella, she determined that two potential syndromes were present. Next our discussion of the possibilities, we were told that a choice needed to be made the following day.
We had to kiss our little one goodbye at twelve o’clock in the morning so we could return to our room. It was quite difficult to tear myself away from her. It seemed imperative to me that we shield her from harm. I couldn’t help but wonder if she was perplexed as to why we couldn’t be there with her. I couldn’t help but wonder whether she ever felt unwelcome. It ripped me apart on the inside since she was urgently attempting to latch on to my breast despite not allowing me to feed her. I was ignoring my baby. Bella yearned for a deeper connection with her mother, as well as for closeness and a sense of security. In addition, she was starving and wanted to be fed. These were the things that were beyond my means to provide for her.
When we got back to our room, my husband and I discussed our emotions once more, hugged and kissed one other goodbye, and then went our own ways to think about what had happened.
The next day saw a little improvement in the overall situation. Both of our parents came to the house early to be with us. We were forced to make a significant choice between two children’s hospitals: Standford Children’s or UCSF Children’s Benioff. Given this, we determined that it would be in everyone’s best interests to contact one of my closest friends who worked in the medical field.”Hello, Noel; Bella has arrived and is now in the NICU.” She is a little bit different, and our trip is also a little bit different, but I need your aid.’ The value of one’s family and friends cannot be overstated. ‘That’s alright, Liz. I’ll be right there, and you shouldn’t worry about a thing because everything is going to be all right.
After receiving my phone call, Noel arrived at our location twenty minutes later. Following a discussion of our available choices, she contacted Kevin, a local surgeon, to seek his advice and assistance in making our choice. The phone call that Noel made allowed us to make contact with the most qualified physicians and surgeons. After not quite an hour had passed, Carol, who is in charge of the craniofacial department at Children’s, sent me a text message. Our quest had started, and Bella’s town flourished.
On Saturday morning, October 27, 2018, we were sent to the Children’s Benioff Hospital located in Oakland. As I entered Bella’s room, I saw that she had a lot of cables attached to her body. She was so little and delicate despite her size. I have no doubt that she pondered the question of why her frail body couldn’t just be left alone. During the process of moving her to the incubator, I serenaded her with songs. We cradled her little hands and reassured her that her mother and father were not far behind her.
The beginning of Bella’s medical odyssey started the moment that we arrived at the hospital.
When we entered and exited the NICU on many occasions, we were required to adhere to a certain process. A number of experts and neonatologists were there to meet and welcome us.
Additional tests, such as x-rays, examinations, and assessments, were required to be performed on Bella. Evenings found us having to leave Bella behind at the medical centre. It was very challenging to juggle the responsibilities of parenthood, a new baby, a rare condition, breastfeeding, and the daily information that was delivered.
When we returned home, we first went into Bella’s room, where we both clutched each other and sobbed. We had no idea that it would be without a mate when we returned home. Whenever I had to get up in the middle of the night to pump, I would use that time to check in on Bella via the NICU webcams. Through various forms of media, I communicated with my daughter. That was my typical routine.
After approximately a week, it was revealed that Bella had a disease known as Treacher Collins, which is an extremely uncommon genetic illness that prevents the facial bones from fully developing. This condition is exclusively seen in newborns, and only ten per cent of the time is it possible to diagnose it using ultrasonography.
Bella was born with a number of congenital conditions, including microtia, hearing loss, a short and recessed jaw, a narrow airway, and a hard cleft palate. Because of this, Bella had her very first operation when she weighed only 7 pounds to have a g-tube inserted. The use of a gastric tube feeds Bella. The whole length of our stay in the NICU was eight weeks. Our house was in the neonatal intensive care unit. The whole of Bella’s day was filled with fun, thanks to Erik’s parents, my parents, and both of our sets of grandparents. In addition to the two of us, I was really fortunate to have one of my wonderful buddies, who also works as a nurse at the hospital, check on Bella during her shifts. This was particularly helpful in the evenings when I was already at home.
On December 8, 2018, after receiving the necessary medical education and instruction to care for Bella properly, we were finally allowed to go home and continue our lives. My husband and I were her parents, and we also cared for her as her nurses. We have been through a flurry of events, including multiple trips to the emergency room and choking incidents at home.
We have made significant progress, and I do mean significant progress. Because of the training we acquired in the neonatal intensive care unit (NICU), I could rescue my daughter many times.
Bella, who is now 16 months old, has had four major operations, three of which took place in an inpatient setting and one outside the hospital. The vast majority of kids born through TCS have anywhere from 20 to 60 or perhaps more procedures on average. Nearly all of them suffer from some kind of hearing impairment, and some of them even have tracheostomies to help them breathe.
In addition to an early start with the school system, Bella participates in occupational therapy, speech therapy, and a music program designed specifically for children with hearing loss. Our path is different, and so is our everyday life, but I wouldn’t trade any of it for anything in the world. As a mother, sister, wife, friend, and acquaintance, I have gained a great deal of knowledge from this experience as a whole.
Because of this, life may be unexpected, and when it does, we may not be ready for the shift. The fragility, beauty, and, at times, the ugliness of life are constants. I am fortunate to be able to give Bella the necessities of life, and for that, I am thankful. Isabella has a significant network of people who are rooting for her success, including friends, family, customers, and followers on social media. It has been much simpler to readjust to our typical routine now that everyone is travelling with us.
