“Sterling’s story begins on April 24th, 2019, when I went in for an ultrasound to check on a solid mass that had grown on my ovary. The ultrasound tech was delighted to tell me the mass was gone and even more excited to tell me there was a baby in my womb! Surprise! 6 weeks along and I had no idea. I’ll never forget the way the ultrasound tech hugged me after that appointment as if we were old friends. I was shocked, happy, and also nervous to tell my husband we were expecting our fifth child, due just 15 months after the birth of our last baby. When I got home from that appointment, we hugged and laughed.
‘We’re good at what we do. We can handle one more,’ he assured me. We laughed some more in celebration of the newest member of our family.
I had an uneventful pregnancy. I had prenatal care throughout my entire pregnancy, through my OB and my midwife, who is licensed and certified. The baby was healthy and nothing was out of the ordinary. My first was born in the hospital, and I arrived at 10 cm dilated. My second was also born in the hospital, and I arrived crowning and pushing in the parking lot. We pulled up at 2:08 a.m. and she was born at 2:15 a.m., on a triage bed as they wheeled me down to the delivery room. With a history of incredibly fast labor and births, even my doctor agreed I was a perfect candidate for a home birth. Babies 3 and 4 were born at home and we were planning our third home birth for baby #5.
We kept our fourth baby’s gender a surprise and we decided to do the same for this pregnancy.
Around 30 weeks, I had a dream we had a son with lots of dark hair but he wasn’t well and we were in the hospital with him. I woke up, knowing in my heart I was pregnant with a boy. I felt my intuition warning me that we might need to transfer to the hospital. My gut told me to get the car seat ready and to pack a hospital bag just in case.
If I knew then what I know now, I would’ve planned a hospital birth. Our home birth was perfect, but we were discriminated against by doctors in two different hospitals. I always thought if we ever needed to transport to the hospital during a home birth, the doctors would be there for me when I needed them. I couldn’t have been more wrong. I don’t want to scare anyone out of a home birth. I know home birth is the safest option for some people (and quite honestly, maternal healthcare in this country is nowhere near where it should be) but I would advise my fellow home birthers to make sure there is a plan in place for which hospital you would be transported to, if needed. My advice is to make sure you have a hospital with doctors you can trust. In the event of an emergency, they are all you have. My midwife never let me down, but many doctors did in our time of need.
Around 9:30 p.m. on December 4th, just one day shy of 38 weeks, my water broke. We called the midwife and at 12:02 a.m., Sterling Wilde was born safely at home. He cried immediately after he was born and I will be forever grateful we heard the sound of his cry. His newborn exam was perfect and there were no signs anything was wrong.
We had one perfect day with Sterling. He was just like any other newborn. He nursed every 3 hours and slept very well in between. He had visitors all day and got to meet his auntie, his cousin, grandparents, and great-grandmothers. He loved to be held very snug and tight and if you released your arms, he would cry until you held him tight again. I love that about him. My mom pointed out it’s as if he knew we didn’t have very long with him, so he reminded us to hold on tight while we still could.
Everything seemed normal until later that evening. Sterling fell asleep and I was struggling to wake him to nurse. He would latch on, but fall right back to sleep. We noticed he was also making a strange noise at the end of each breath. It sounded like a sigh. Our midwife came back, checked his vitals, and showed us he was experiencing chest retractions.
Less than 24 hours old and he was showing signs of respiratory distress. We grabbed our bags, buckled our little guy into his car seat, and rushed to the ER. On our way there, the little sighing noise he was making earlier had turned into a grunt.
When we got to the ER, an entire sh*t show ensued. Because Sterling was born at home, he was denied care by the neonatal doctor. He refused to come down and assess and treat Sterling, so the ER staff was running around, freaking out they weren’t prepared for a newborn. An ER nurse even told me they tend to panic when they get a baby because their ER wasn’t prepared for a tiny patient. They didn’t know how to work the warmer and ended up keeping it way too hot. They didn’t have any baby-sized equipment. It took 4 hours before he was finally put on CPAP. A doctor from another hospital accepted him as a patient and requested CPAP for him and finally, he was seen by a Respiratory Therapist. A NICU nurse came down to see him and yelled at the ER staff for not having the proper equipment for a baby. They didn’t have infant-sized suction, the correct monitor for his temperature, and the CPAP tube wasn’t put on him correctly. It was horrific. I don’t know that I’ll ever forgive the doctor who (illegally) denied my son as a patient.
We were in the ER overnight and finally transferred to the other hospital so he could be admitted to the NICU. All tests came back negative. No pneumonia, meningitis, infection, etc. His lungs were perfectly clear. The doctors were completely baffled. If I knew then what I know now, I would’ve asked them to check ammonia levels during the first round of testing. This could’ve saved his life. Anyway, we’ll get to that part later but I hope more doctors become aware of Hyperammonemia and check ammonia levels more often.
We arrived at the new hospital late Friday morning and Sterling was admitted. We had so much hope for a full recovery. We were told other than the labored breathing, he looked great and this was most likely a case of RDS. They told us we would probably be in the NICU for a week or two and then we’d be taking a healthy baby home.
But by the afternoon, Sterling had a seizure, stopped breathing and had to be intubated.
By the evening, Sterling’s heart had stopped and he needed to be revived. This was the day I knew we probably wouldn’t be bringing our son home. We still didn’t have any answers as to why any of this was happening, but we knew that Sterling was rapidly deteriorating.
We were told Sterling was sedated and put on anti-seizure meds through the weekend and on Monday, he would have an MRI to determine the state of his brain.
Throughout the weekend, there was talk Sterling was showing signs of brain damage but nobody knew the extent. We had no idea what to prepare for. They would tell us they were concerned that he wasn’t moving, but then blame it on the meds that kept him sedated. They would tell us he might never be able to swallow but in the same breath, talk about how we might be able to bottle feed him soon. The nurses and doctors constantly went back and forth on how bad the situation was and we were so confused. One minute, we would have so much hope and the next, it would all come crashing down.
On Sunday, one of the doctors tried to explain what they thought was happening. Their working diagnosis was an HIE injury due to a lack of oxygen from birth asphyxia. I was furious. I knew this wasn’t the cause. There was no way that was what happened and to make matters worse, the doctors refused to watch our birth video and refused to speak to my midwife. Every question they asked me about the birth seemed to prove it couldn’t have been a birth injury. I didn’t have a long labor, he didn’t get stuck, and he cried immediately after birth. His Apgars were all 10s. I thought if this truly was an injury due to lack of oxygen, it was probably due to the fact the first doctor delayed care for 4 hours. I couldn’t even bear the thought.
Finally, it was MRI day. They didn’t get him down for an MRI until later in the day, so we had to get through another night before we got results back. That night, I laid in bed and I sobbed and prayed. I knew deep in my heart, we were going to lose him and I begged God for a miracle. I tried to bargain with Him. Finally, I begged God to at least change the cause of his death. If we were going to lose him, I couldn’t bear the thought of it being due to lack of oxygen. I felt like it was my fault for not bringing him to the ER sooner, for not advocating for him well enough, and I felt it was my fault for choosing home birth. I knew the birth wasn’t the cause, but if he would’ve been born in the hospital, he never would’ve been viewed as a ‘dirty baby’ and denied as a patient in the first place.
The next morning, after a lot of wailing and very little sleep, I woke up and got in the shower to get ready to go back to the hospital. My phone rang and my husband answered it. It was the NICU, calling us to tell us they found high ammonia levels in Sterling’s blood and he was going to be transferred to CHLA. When we got to the hospital, they told us Sterling was most likely born with what they call an inborn error of metabolism and that is what caused all of this. I couldn’t believe it. It was an answer to one of my prayers. It took a lot of the guilt from me, but we were crushed.
We also got his MRI results back and by now, he had been sitting with high ammonia levels for days and his brain was so badly damaged. I remember feeling it all. I was devastated that his brain was in such bad shape and relieved that the doctors were wrong about his diagnosis. I was also relieved to be transferred to a new hospital.
Our nurses were always amazing but the doctors made me feel very discriminated against for choosing home birth. They didn’t even care to hear the details of the birth, to listen to me or my midwife, to watch the birth video, and accept birth records. They didn’t listen to me when I begged them to look for other answers, because I knew it wasn’t a birth injury. I believe if they would’ve listened to me in the first place, they would’ve moved on and checked ammonia levels much sooner and that possibly could’ve saved Sterling’s life.
When we arrived at CHLA, the doctor sat down with us and told us there was nothing they could do to change the outcome, but they could give us an answer to why Sterling was dying.
Shortly after, she came back to let us know Sterling’s newborn screening came back positive for a metabolic disorder, a Urea Cycle Disorder called Orthinine Transcarbamylase Deficiency. Orthinine Transcarbamylase (OTC) is a liver enzyme that aids in the breakdown of ammonia in the body. Without OTC, Sterling’s body couldn’t flush out ammonia and it built up in his body. Ammonia is a neurotoxin and high levels of ammonia in the blood left for too long can cause irreparable damage.
We already knew he wasn’t going to live much longer. Now, we had our answer to why all this was happening. The following day, we had a meeting with Sterling’s doctors, the nurse, the neurologist, and the geneticist. They explained Sterling wouldn’t live much longer because the damage to his brain was causing his other organs to shut down. The hospital staff kindly lifted the visitor restrictions and we invited our family down to come to meet him while they still had the chance. He spent his last day meeting family members and ‘making memories’ with his siblings.
Later that night, after everyone had gone, Sterling began to die in our arms. I didn’t know if he could hear me as he took his last breaths, but I knew mine was the first voice he heard when he was born and I wanted to be the last he would hear before he died. I needed him to know he wasn’t alone. When he was dying, I felt the lump in my throat swell, but I prayed for strength to just get a few words out. I was able to tell him I loved him and he didn’t need to fight anymore. I swear he heard me because he died so quickly after that. There was so much heartbreak and still, so much peace in that moment. I know God was right there with us and we were surrounded by angels. Even the nurses commented on how peaceful it was in the room.
I stared at my son and I could see the life leave his body. ‘Is he gone?’ I asked the doctor. She confirmed his heart had stopped beating and pronounced him dead at 10:12 p.m. on December 11th.
Watching him die, I felt every part of me break into a million pieces. My heart, my soul, my dreams were all crushed in one moment. A part of me died with him that day and I knew I would never be the same.
After he was gone, I was able to care for his body. I bathed him, changed his diaper, and swaddled him in a blanket I had brought from home. My husband and I spent hours with him and I knew no matter how many hours I spent there, it would never be enough time. I held him as the warmth left his body. I felt him grow cold in my hands. I held my hand on his head to warm him back up, and every time I moved it away, his head would get cold again.
When it was time to give him to the nurse, I thought I might die. It hurt so bad, I thought for sure my heart would stop and my husband would be making funeral arrangements for two. I had to remind myself Sterling was gone and this was only his body. She explained she would take him down to the morgue and we would get a phone call when they released his body. It felt so surreal.
If I knew then what I know now, I would’ve spent more time with his body. I would’ve asked if I could be the one to take him to the morgue. Once he was transferred to the funeral home, I would’ve asked to hold him again. It sounds morbid to those who don’t understand, but for a grieving mother, this is the last time we ever have with our babies.
He wasn’t just a dead body to me. He was my son and even after death, I wanted to be near him.
My husband and I walked out of that hospital, hand in hand, without our baby boy. We heard the cries of other NICU babies and wished it would’ve been Sterling. I wished the nurse would’ve called me back, saying there had been a mistake and he was alive after all.
The car ride home was more peaceful than I ever would’ve expected. Part of me felt like it was all a dream and another part of me felt thankful Sterling was finally at peace, after a rough 6 days.
In the wee hours of the morning on December 12th, during our drive home from the hospital, I received a phone call from One Legacy. The man on the other side of the phone was kind and sensitive, knowing what we had just been through. He asked if we would be willing to donate Sterling’s heart valves to other children in need. I didn’t even hesitate. Sterling didn’t need them anymore and I knew what it was like to be praying for a miracle. A few days later, two tiny heart valves were recovered and donated to two babies in need. We didn’t get the miracle we wanted, but Sterling was the miracle these families were asking for. Sterling left a lot of little gifts behind. We were also able to donate his breastmilk I had been pumping to another baby boy right around Sterling’s age.
Sterling may not be here physically, but his soul and his legacy live on. His story has reached far and wide and his short life has impacted so many. I am so proud of my son. I would give anything to still have him here with me, but I rest in the hope I have in heaven. Sterling, I will see you again one day. Until then, I will long for you every second of every day. There are no words ever written or spoken that can describe the depths of my pain, but my love for you is deeper still.”
This story was submitted to Love What Matters by Breinne Chavers. 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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