‘I called my husband to say, ‘I don’t want to live anymore. I can’t keep fighting this.’ I’d hit rock bottom, then discovered I was pregnant.’: Woman survives fatal Biliary Atresia to birth miracle baby, ‘I defied all odds’

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“When you are faced with a situation that is life or death, you have no choice but to fight. I was diagnosed with Biliary Atresia at six weeks old. This is when my fight to stay alive and to live began. It had never crossed my mind to give up, but I wasn’t prepared for the mental battle I would be constantly facing.

The day the doctors told my family I was born with a birth defect to my liver and would suffer from a chronic illness, they gave them a booklet. The booklet was to help us prepare by discussing the surgical aspects, the preparation, and the recovery, along with the potential physical side effects I could potentially experience. However, what it did not discuss or prepare was how it was going to affect my mental and emotional state.

Courtesy of Hannah R.

Everything changed when I started middle school. I began to start comparing myself to the other girls and how they looked. I started hearing the rumors spoken about me by my classmates. They did not understand how one day, I was at school and then suddenly, I was gone for two weeks, returning with a ‘broken arm’ each time. I would wrap my hand and arm that had an IV, not to protect it, but because I was too embarrassed to tell other kids I had been in the hospital. I felt so much shame about who I was and how different I was, I began to put up walls. I had so much anger building up inside of me, I felt like I was going to explode. I looked at my classmates and my brother, wishing so badly I was them. I remember so many nights crying myself to sleep, asking, ‘Why me?’ All I wanted was to be accepted. What I was missing was accepting myself and loving who I was.

It was finally my freshman year of high school, which meant a new school and a fresh start for me. I was so excited I had made it 7 months without a hospital visit, which meant freshman year was almost over and no one knew me as the sick kid. Things quickly changed one day when I woke up in so much pain, I couldn’t handle it. My family once again rushed me to the ER. This was by far the worst infection I had. My liver pretty much stopped functioning. My eyes were completely yellow. My arms and legs were purple and blue, like someone beat me. The bile in my blood made anything that touched me feel like needles were poking me. All I could think was, ‘What is everyone going to say about me this time when I go back to school?’

I finally talked them into letting me go on homecare so I could get back to school and my daily life. I had a clinic appointment a few weeks later, which was normal for me. I didn’t think twice about going in that day. I had heard a few times before, one day a liver transplant may be a possibility. I had no idea that day was today. I went into the clinic that morning and the doctor sat us down to tell my family only 10% of my liver was working. Not only did they have no idea how I survived this long on my liver but I needed to be placed on the transplant list as soon as possible. I had no idea how to even process what he just told me. All I remember was my mom crying and then they started talking about when to start all the testing. I felt like this couldn’t be real. I was in a bad dream.

A few weeks later, I was officially placed on the transplant list, which meant my team had everyone’s contact information in case the call came. It had been about nine months since I had been on the list. At this point, I had taken getting the call off of my mind or it would have driven me crazy with anxiety every time the phone rang.

My dad was a pastor and every Wednesday night, we went to church. Most nights, I left my phone but for some reason, something told me to take it. During praise and worship, I kept feeling my phone vibrate. After the third call, I decided to go out in the hall to check it, thinking it was my friend calling me. I noticed I had a voicemail. I will never forget what it said: ‘Hannah, we have a liver for you. I need you to call me back as soon as possible.’ The phone slid out of my hand and dropped to the floor. I was in complete shock. I didn’t know what to do. I walked back into the sanctuary, numb inside, and whispered to my mom, ‘I got the call, Mom. They have a liver for me,’ as tears started running down my face. She went ghost-white. She walked up on stage and grabbed my dad to tell him the news. He began crying as he told everyone, ‘I am sorry but church is over. Hannah got the call and we have to leave.’ All I was concerned about was calling my sister in Texas to make sure she could be there. I knew if she was there, I could do this.

Friday morning at 5 a.m., my family and I walked into the ER at the children’s hospital for the biggest surgery of my life. As they wheeled me into that OR, my mom and sister stood by my side. The operating room was cold and scary. All I could see were the tools and knives they were about to use on me. As I kept looking around, I began to panic. They put me on the table and started strapping me down when I lost it, tears were dripping down my face. I told them, ‘No, I can’t do this. I want out.’ My mom and sister grabbed my hands to comfort me. I woke up from that surgery in pain but feeling healthier than ever before. I remember telling my family how excited I was to finally be a normal kid.

I went back to school a few months later, thinking everything was going to be different now and I could finally put my guard down and meet friends. I failed to realize it wasn’t my health that was the problem. It was how I thought about my situation. I was now healthy but I was still this insecure girl who now was embarrassed about her new scars, the stretch marks from how big my belly had been, and still wishing I was someone else. I spent the next few years making up for the lost time, spending every moment I could with my friends. It looked like I was having the time of my life but inside, I was so unhappy and angry at the world. I felt like something was owed to me because of everything I had gone through.

Courtesy of Hannah R.

Five years after my first transplant, things started to change. I began getting sick again. At this time, I was living in Texas and had a very serious boyfriend. I had to tell him I needed to move back home. He decided to come with me and the next thing we knew, we were living in Colorado. I was so excited to have him with me but I felt the guilt and shame rushing back. I had always felt bad I was expensive for my family and they had to spend most of their time in the hospital with me. I also knew they were my family and loved me. It was different with him. I feared I would never be enough and he deserved someone better than me. I always felt like I had to make up for every time he had to take me to the hospital. I let myself believe all these negative things about myself.

Next thing I knew, I was being told I needed a second transplant. I wasn’t sure I wanted to do it. I now had a husband who was about to go through an experience no one could prepare him for. We decided together to do this and a little over a year later, a call at 5 a.m. changed my life for a second time. This time wasn’t at all like my first transplant. I had no idea at the time but the following year was going to be the hardest year I had ever been through. I truly believe God brought me Ryan to give me something besides myself to fight for that year. I’m not sure I would have made it otherwise.

Courtesy of Hannah R.

There were many times I remember looking at my frail body in the mirror, tubes coming out of many places, thinking it would be easier on myself and my family if I didn’t wake up the next morning. I didn’t even recognize the girl looking back at me. I had lost all my drive, tenacity, and excitement for life.

Courtesy of Hannah R.
Courtesy of Hannah R.

I remember calling my husband one afternoon, telling him I don’t want to live anymore. I couldn’t keep fighting. I was exhausted and feeling sorry for myself. I had hit the bottom of rock bottom and I had two choices to make: either get up or lay down and die.

Courtesy of Hannah R.

I chose to get back up and keep fighting. Thankfully I did because, in March of 2017, we found out I was pregnant. We were in disbelief because I was always told I couldn’t have kids. It never ceases to amaze me all of the odds I defied in my life. Welcoming our precious baby girl into the world made me realize I had to get my mental health under control. She deserved to have the best version of me.

Courtesy of Hannah R.
Courtesy of Hannah R.

People ask me, ‘How did you do it? How have you overcome so much and have this positive outlook on life?’ I never knew how to answer that question until just a few weeks ago. My physical health struggles were not the hard part. When something like that is put in front of you, you just fight because you have no choice. It was my thoughts that caused me so much pain. I had this persona that looked strong and like I had everything under control. I believed being vulnerable was weak, so for 28 years, I struggled inside and no one knew it.

Courtesy of Hannah R.

I wish someone would have shaken me a long time ago and showed me all of the beautiful gifts that were inside of me. For so long, I was seeing my story through the eyes of a ‘poor me’ mentality and missed all the beautiful things about it. What if we looked at our situation as we have been picked, not picked on? I began to love myself for the first time and see I wasn’t a burden to anyone. In fact, they saw me as someone who inspired them.

We all have unique stories and things we have been through that we can’t always control. What we can control is how we choose to think about our situation. I began to look at my life and be thankful I learned to persevere through any obstacle I faced. I had a strength deep down inside of me I trusted. I knew no matter what, nothing could ever take that from me. I had a miracle baby and a family that loved and supported me. My life has never been easy but I chose to let my pain become my purpose and when that happened, everything changed inside of me.

Willow and Pine Photography

I hope everyone who reads this remembers it’s not what happens to you but it’s what you do with it. Your circumstances don’t define who you are or make you less than anyone else. You are more than enough. You will inspire others when you open up and realize your mind is the most powerful valuable tool you have. When you fill it with positive thoughts and love, your life begins to change.”

Courtesy of Hannah R.
Courtesy of Hannah R.

This story was submitted to Love What Matters by Hannah Rosenfelder from Houston. You can follow their journey on Instagram. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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