“You truly never know how strong you are until you have your entire life ripped out from under you, and you have no choice but to fight. On January 9th, 2020, I started my day off normal, brought my two older boys to school, and headed to my monthly pregnancy appointment. I was 33 weeks and a few days pregnant and had been having a few weird symptoms: random headaches, weird vision, and I just wasn’t feeling myself. When I went in, they weighed me. I’d lost 10 pounds but didn’t think too much about it. I went on to tell my doctor about how I had been feeling, and she told me they were going to get some labs and I could go home. I kind of hesitated, then told her I would be a lot more comfortable if I could go over to triage and just have them run the labs. She didn’t seem too concerned, so I didn’t worry much. I just wanted to be 100% sure everything was okay.
They checked me into triage, and I was put in a room by myself. I had the normal blood work done, and they hooked me up to monitor the baby’s heartbeat and my blood pressure. As time went on, I started to get anxious and a little irritated. I was starving! Finally, one of the nurse practitioners came in. She sat down, and instantly, I could tell something was wrong. She said she wasn’t comfortable with the baby’s heartbeat, and she was going to order me an ultrasound. I panicked and called my fiancé to tell him he needed to head to Albuquerque because something might be wrong with the baby. In 2017, I gave birth to our daughter stillborn, and now something might be wrong with our rainbow baby.
I couldn’t think straight. I remember looking at my aunt and telling her, ‘If something happens, I’ll never be the same. I can’t do this again, I can’t lose another baby.’
The nurse popped back in very shortly after the nurse practitioner left and took me for my ultrasound. I honestly couldn’t tell you how long after the doctor came in. I remember sitting there in complete shock. How could I have not known? The doctor told me I had little to no amniotic fluid, and my baby’s kidneys looked slightly echogenic, ‘meaning on the ultrasound, the kidneys were bright white.’ I had no clue what any of this meant. I just wanted my baby to be okay. They admitted me to the hospital, and we waited and waited. Everything seemed okay, and no one seemed too concerned. I was told I was going to be kept in the hospital as long as possible so we could closely monitor the baby’s heartbeat, and since I had no amniotic fluid, they didn’t want the baby to stress even more. I was admitted on June 9th and on Saturday, January 11th at 10:11 in the morning, I had a 3-pound 11-ounce little boy, Camden John Martinez. He was beautiful.
NICU life is hard. I wasn’t able to hold him. I could only touch him through these two small holes on the side of a plastic box. The doctor’s first thought was Cam had something wrong with his kidneys. There was no amniotic fluid, and I didn’t rupture or leak so there was no answer, other than his kidneys weren’t working, but he was peeing? After a few days, some of his labs kept coming back a little off, and they decided to transfer us to a higher-level hospital. I lost it. I was at the end of my rope. I couldn’t bear seeing my baby like this any longer. I hated that I couldn’t hold him, that I couldn’t just be his mom and take him home. I was discharged that same day and we headed to the next hospital. I honestly couldn’t tell you how I was functioning at this point. I was recovering from a c-section, my blood pressure was high, they couldn’t figure out was wrong with Cam, and I felt like every wall was closing in on me.
We met with a few different specialists. The first one was his kidney specialist, and she informed us his kidney levels were high and more than likely, someday he would need a transplant but it would depend on his kidney levels. The next specialist was for his liver. His blood labs were coming back abnormal, and they were concerned because his ammonia levels were a little high, and they had also found two shunts on his liver that never fully closed. He told us he was going to call Colorado Children’s Hospital and we would be doing more labs. We went to have lunch and not even 20 minutes later, ran back into our liver doctor. He stopped us in the hallway and said Colorado was worried and may want to transfer us there. ‘They think he might have a very rare liver disease called GALD short for gestational alloimmune liver disease.’ It was like being hit in the face with a ton of bricks. I had so many questions rushing through my head, I could feel myself start to get hot, and I fell apart as we walked down the hallway. My fiancé held me and reassured me over and over it was going to be okay.
It was a Friday, and it was the first time I was able to hold my sweet boy. It had been almost a week, and I finally got to hold him skin to skin. It took everything in me not to cry the entire time. He was perfect. He was everything.
That night, we were sitting next to Cam about to help with his nighttime cares, and this woman walked over. No introduction, no hello, all she said was, ‘Your son is being transferred to Colorado Children’s Hospital tonight.’ In that moment, I couldn’t breathe. I had never been so scared in my entire life. I didn’t know what to say, let alone what to do. I remember it was a shift change and our night nurse, whom we had never met, was standing next to Cam across from me. She had tears in her eyes and she hugged me and held me while I fell to pieces. My fiancé, DJ, was my rock. He kept it together for the both of us. He asked the questions and made sure our boy was taken care of.
The flight crew arrived and reassured me over and over he was in the best hands he could possibly be in. I pulled myself together, kissed my boy goodbye, and we headed to Colorado. It was a 6-hour drive for us, and we arrived at about 5 a.m. the next day. We were exhausted and just wanted to see our boy. When we got there, I was so happy we had our own room, and we could sleep bedside. I never had to leave his side. We met the night doctor and a few nurses and then had to switch every single one of my milk labels and let me tell you, it was so much fun. We finally finished and went to bed. I woke up to one of the scariest moments in my entire life. People were running everywhere; our doctor was giving orders. ‘His blood pressure is dropping,’ was all I could hear her say. I just sat and I prayed. I prayed with every fiber in my entire body. I was screaming inside, watching my son decline and fast. His numbers just kept dropping and dropping until they finally got his blood pressure back up.
My baby was in shock. He was intubated and on very high doses of blood pressure meds. We weren’t even in Colorado for 4 hours and this is what was happening. I was a mess, I couldn’t eat. I would doze off and wake up in a panic. The next few hours were filled with terrifying conversations, moments where I wanted to just lay on the floor and give up, but I’d look at Cam, and I just knew how hard he was fighting. I couldn’t give up. He deserved every ounce of fight I had left. Colorado was now our home. We had several specialists on our team, and they were all concerned about the same thing: Cam’s blood wasn’t clotting, his PT/INR levels weren’t normal, and several other levels were off. He was having to get several blood transfusions a day at this point, and everything was starting to point even more towards GALD.
My baby was in liver failure. How was that even possible? This disease is rare. They see zero to one case a year, and that terrified me. One of the ways to help with this was with IVIG ( Intravenous Immunoglobulin). This essentially is supposed to help the body from attacking itself. By the time we got to Colorado, his kidney levels were back to normal and they found his shunts had actually closed.
We were moved to a room across the hall, so we could have our own bathroom and a little more privacy. Cam wasn’t officially in recovery, but he was fighting and he was fighting hard. Every day was a battle, always two steps forward and three steps back. His blood still wasn’t clotting, he was still intubated, and none of his levels were showing any improvement. Eventually, we started having more good than bad days. He was finally able to be extubated. We were able to hold him and pick him up whenever we wanted and we were even able to put him in clothes for the first time. We had hope and I finally felt like we were in recovery mode.
Our two older boys were coming to visit for the first time, and this would be the first time they would be able to meet their brother. I woke up that morning, ran downstairs to get coffee so I could make it back for rounds, and when I got back up to our room, I headed over to Cam so I could tell him good morning. I started to notice he looked like he was struggling to breathe, almost like he was choking. He coughed, and blood came out of his mouth. I yelled for the nurse. His heart rate started to drop and I started to scream. The nurse ran over to hit the code button. People rushed in from everywhere and instantly started trying to get his blood pressure up. I could hear, ‘He’s dropping!’ Then I heard her yell the number ’37.’ His heart rate had dropped to 37! I prayed harder than I’ve ever prayed before. I wasn’t going to lose him, I couldn’t. Not even 24 hours ago, I was holding him — no tubes, no wires, just him — and now a nurse is running for the chest compression board. After seven tries, they got him intubated and he was back on blood pressure meds.
At this point, we were being told there wasn’t much they could do. We ran down to get some food, and when we came back up to our room, our doctor sat us down and said the metabolic team had a drug that rids the body of ammonia and we were going to try it on Cam. The downfall to this was the drug needed the liver to be functioning to work. We ended up giving him this drug along with a few oral medications and it worked! There was no better feeling in the world than when our nurse let us know his levels were lowering.
It had been a few days, and we had some more ups and downs. His liver still wasn’t responding. ‘What’s next?’ We had so many questions and had no clue what to expect. Our liver specialist finally sat us down and explained we needed to start talking about a liver transplant. To even get a liver for a transplant would be very hard because of his size. He looks big in pictures, but he was still itty bitty. He was very fluid-overloaded but his dry weight was still very small.
We had several meetings and calls during the next 24 hours. My insurance wouldn’t let us stay at Colorado Children’s for the transplant, so we had to be transferred to a hospital they had a contract through. Texas Children’s Hospital was the best choice. I had hope for the first time in what felt like forever. Texas Children’s accepted us, and we were transferred within days. DJ flew with Cam and I drove 15 hours to Houston. We were now in a PICU and a lot of things changed and fast. Cam was put on dialysis because when he arrived in Texas, his ammonia had shot back up. He was sedated and sometimes on paralytics. They started his transplant evaluation immediately. At first, Cam was ‘tabled,’ meaning they needed a few more tests. He was having a hard time staying stable when they would remove him off of the dialysis. He needed constant blood pressure meds and was still intubated so taking him down for a CT scan was terrifying and very difficult. Our first attempt didn’t go well. He ended having to be resuscitated several times. After a few days, we tried again, and we were able to get the scan done.
The results of this scan would determine whether or not Cam would be approved for the liver transplant. If his heart was strong enough, everything would fall into place. Two days later, our liver doctor came in and brought me down to a conference room with several of our other doctors. I was terrified, I was shaking, I had absolutely no clue what they were about to tell me. They sat me down and began to tell me Cam’s arteries would not be able to withstand surgery and there was no way they would be able to do the transplant. I sat there in complete and utter shock. There was nothing they could do, there was no way to save my child. He was too sick, and there was nothing we could do.
As a parent, there is no pain that even compares to the pain of making the decisions we had to make in the next few days. We chose to spend the weekend with him. They got us a bigger bed so I could lay with him. We made keepsakes and made memories. My older two boys got to lay with Cam and cuddle him. We did everything we could to make those last moments as special as we could. We had family fly into Houston so they could say goodbye. Monday morning came fast. When I woke up, I could feel it in my bones. I knew what was coming, and there was no way I could stop it. We gave everyone the chance to hold him one last time, and we told the doctor we were ready. I held Cam in his bed, and my fiancé sat right next to me. We held our boy as he took his last breaths, as our lives changed forever. I lost a piece of me that day. No parents, no human being should ever have to go through we went through, and my heart goes out to anyone who has felt this pain. He passed on March 2, 2020.
Camden changed lives and stole so many hearts. He gave me a voice and made me a better person, and even more… a better mother. He was so tiny but so strong. He brought nurses and doctors into our lives who we now call family. He was a beautiful little soul and I am so blessed to be his mother. He has helped me start to advocate for other women and inspired me to give back and make a difference. He fought as hard as he could and I will continue the fight for him.
We hope to have a foundation in his name to help fund research for his disease, Gestational autoimmune liver disease. I also help NICU mothers with outside resources and resources to help them during their stay in the NICU.”
This story was submitted to Love What Matters by Brittany Stepper from Grants, NM. You can follow their journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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