My name is Breinne and I'm a mom. I am a stay-at-home and homeschool mom from Southern California and I had six beautiful kids, five of them are here with me in my arms and I have one in the stars. So, this is Sterling’s story.
Sterling was a surprise baby. We already had four kids and we were talking about being done and he just snuck in there, so it was meant to be. We were shocked but also thrilled to find out that we were expecting a fifth baby. During that pregnancy, it was very uneventful. I was under the care of an OB doctor and her whole team and also under the care of a midwife, so I had regular prenatal care like everybody else. We did prenatal screening and genetic testing and everything came back normal, so we didn't think that there was anything wrong. There was no reason to suspect anything. On December 5, 2019, Sterling was born at home into water. I had a home water birth with him. When I caught him with my hands and lifted him onto my chest, he cried. And that was one of the most beautiful sounds that I've ever heard in my life and will probably ever hear.
Everything was going perfectly and smoothly. His newborn exam went perfect. His APGAR scores were all 10. He was eating well, breastfeeding was going smoothly. He was peeing, pooping, everything that a newborn should be doing. Everything seemed right...until the following day. Later that evening, the next day, Sterling started showing signs of respiratory distress, so we rushed him to the ER. When he was in the ER, all of the testing came back negative and they didn't know what was going on with him. So Sterling ended up being admitted and, from there, things just went from bad to worse.
His body was going back and forth between hot and cold, warm and hypothermic. His body just couldn't regulate his temperature and I know that's normal for newborns, but he was under the baby warmer, which is supposed to help them regulate his temperature and it just was not happening. The doctors have no idea why. Then he started having seizures and eventually fell into a coma and, at that point, he stopped breathing on his own, so he had to be put on the ventilator. That night, his heart gave out and stopped beating and that is an image that I will never get out of my head. The hospital room was just swarming with hospital staff. There was a doctor performing chest compressions on my one day old baby boy. It still haunts me. I don't think it will ever not haunt me.
So then I just prayed and I just begged Sterling to survive this. I just begged him to stay and that time he actually pulled through. They got his heartbeat back, they had him on medications to keep his heart pumping. Over the next couple days, Sterling deteriorated pretty rapidly. His organs started having issues and it seemed like every part of his body was shutting down. He was having issues with his kidneys and obviously his heart and he was no longer breathing on his own. It was just awful. The doctors had no idea why any of this was happening. They had a working diagnosis that ended up being completely wrong and a few days later they finally ran the right test and found that he had extremely high levels of ammonia in his blood.
At this point, we were airlifted to a Specialty Hospital, Children's Hospital Los Angeles, and there they told us that Sterling had a rare metabolic disorder called Ornithine Transcarbamylase Deficiency, OTC Deficiency. OTC is a liver enzyme that is a part of the urea cycle. The urea cycle converts ammonia to urea so it can be flushed out of our bodies. So, if you're missing any of those liver enzymes, it’s considered a urea cycle disorder. Many people actually live with urea cycle disorders, but it's not the disorder itself that kills you. It's the high levels of ammonia. That's because ammonia is a neurotoxin, so without a way for your body to detox it, the ammonia builds up in your blood and causes damage to the brain. The brain is your command center and it tells the rest of your body what to do. In Sterling's case, his brain was so badly damaged, it was no longer telling his organs to function properly and it was no longer telling him to breathe.
So on December 11, 2019, our 6 day old baby boy, Sterling, took his last breath while my husband and I held him. But this time, we didn't ask him to fight. We told him that he didn't have to fight anymore. We told him that it was okay to go and we told him that we would see him again. I do believe that we will see him again when we die.
The pain is unlike any other. We miss him every second of every day. In the early days of grief I felt like there was no way I was going to survive this. It's been almost 2 years and I still feel like that some days. It feels like my heart is just going to stop beating from the pain. But I am living proof that broken hearts still beat. I'm still here, surviving, thriving some days. We adapt and we learn to live with it. We learned to carry our grief and eventually we learn how to welcome joy back into our lives.
Happiness and hope coexist. Joy and grief coexist. It's like they walk side-by-side, hand-in-hand. I learned that there's a difference between mourning and grief. Grief is the way that you feel about the death of your loved one and morning is the outward expression of that grief. Your grief will stay the same. You will never be anything less than completely heartbroken and utterly shattered that your baby died. That will never change, but the mourning is the part that changes. Some days it's hell. It’s dark, deep and heavy. There’s an outpouring of tears. You just pull the covers over your head and it's all consuming. But some days, the way you mourn will not be so intense. Sometimes it's a wvae that passes by. If you've lost a child, my heart breaks for you. Please be gentle with yourself and know you are not alone.
Sterling gave the gift of life to two children by donating his heart valves.