This week’s story comes from Breinne. She shares how her world was turned upside down so quickly, facing unimaginiable circumstances. Be sure to grab a box of tissues.
Sterling's story begins on a chilly, December night. Stockings were hung, twinkly lights strung, and I had just settled in for the night. After washing and folding tiny baby clothes and blankets, I curled up on the couch next to my husband. I rested my hand on my round belly and quietly requested, "Please don't come tonight, okay?" There were dishes in the sink that I was too tired to wash. I was exhausted from a day of shopping and preparing, all while carrying a 38 week baby in bump and caring for 4 other children. "You can come tomorrow if you'd like."
A little while later, my water broke. I laughed as I jumped to my feet. My husband filled the birth pool, while I called the midwife.
On December 5th, 2019, at 12:02am, our 5th baby was born. Head full of dark hair, slightly bigger for a newborn, yet small in comparison to the rest of the world, Sterling Wilde had made his way earthside and he certainly had something to say about it. He swept us away with his loud, strong cry. We moved from the pool to the bed. Skin to skin, Sterling began his breast crawl and when he was ready, he latched, thus beginning our breastfeeding relationship. He nursed like a champ. I stared down at my little nursling, blown away by his beauty and his soft, round features. I should've known then he was an angel.
The next morning, grandparents, Auntie and Uncle visited. I dressed him in a little onesie and a beanie and swaddled him in a blanket. Little did I know, in my naive and blissful state, that this would be the only outfit I would ever have the chance of dressing him in. We had one night and one glorious day of normal with our sweet Sterling. Then, our nightmare began.
Later that night, with the other four all tucked in bed, Sterling began having trouble. He would latch on to eat, but quickly unlatch, without suckling a drop. His breathing sounded labored. Little sighs after each breath, eventually turned to grunting noises, as we rushed our 1 day old baby into the emergency room. Terrified of the road ahead, we watched and waited, while frantic doctors and nurses crowded around our brand new son.
Test after test was run on our son. We anxiously waited as doctors searched for answers, to no avail. Every test came back negative. We had no answers. We knew Sterling couldn't breathe on his own. Then, we watched in horror as his tiny organs started failing. Sterling was revived and kept stable. I pumped tearfully at his bedside, day after day, every 2-3 hours. I prayed for miracles. I prayed and I pumped. The ounces never passed through his lips, but instead, were passed on to the nurse, to add to the freezer. I had hoped that he would one day be well enough to be nourished by this precious liquid.
On December 11th, our hopes and dreams were shattered along with our hearts. Sterling was diagnosed with a rare Urea Cycle Disorder called OTC Deficiency that morning. He had suffered extensive brain damage from high ammonia levels caused by his disorder. Since his brain wasn't functioning, none of his other organs could either. We knew we didn't have much time with him. The hospital staff was kind enough to lift their strict visiting limitations so family could come visit.
The nurses let me hold him for the entire day. I sat in a chair and held him for hours upon hours, as family made their way in and out to say hello, some for the first time. Everyone had the chance to say goodbye, knowing it would most likely be for the last time.
When everyone had gone home, it was just my husband, Randy, and me with our darling baby boy. Randy and I switched places so he could hold him. A few minutes past 10pm, Sterling's heart rate began to drop. We told him he no longer needed to fight, and boy, did he listen to us. He was so ready to go home to heaven. He must have made a sprint toward streets of gold because at 10:12pm, he passed away.
We spent as much time as we could, holding his little 8lb body without the tubes and wires, knowing he was no longer suffering, but dancing and playing in heaven. This brought us comfort and soothed our aching hearts.
On the way home from the hospital that night, I received a phone call from a man asking what I imagine must be a hard question to ask a grieving mother. In a quiet, somber voice, he offered his condolences and asked if we would be willing to donate Sterling's heart tissue to children in need.
I didn't hesitate, not for one second. Absolutely. Sterling didn't need them anymore and I know he'd be a giver. I know he would want this and be happy to help. We know what it's like to need a miracle, to be so desperate for God to move. We may not have received the miracle we prayed for, but we had the opportunity to pass miracles on to other families, so that's what we did. Two tiny heart valves were successfully recovered and donated to two small children.
The peace and healing that this brought me in return was immense. I started searching for other ways to serve and put my pain to good use. Then I remembered the freezer stash of milk I had acquired. Sterling didn't need it, but maybe there was a baby who did. I pumped what I could for a month and donated it to another mama who needed it for her baby boy, who was born right around the same time as Sterling.
Sterling's life may have been short, but his impact was enormous. Our little baby became our biggest hero, as we watched him fight for his life and eventually, give hope and life to others after his death.
Sterling's legacy lives on in many ways, one of which is to help others with OTC deficiency.
There is not much information about it online and unfortunately, most doctors are not trained to identify the symptoms or treat it until it's too late. I hope to reach as many doctors and nurses as possible to put urea cycle disorders on their radar and hopefully save many people along the way. I also hope to reach moms and families, so the next mother in my shoes might know what testing to ask for when mystery symptoms arise. A simple ammonia level blood test would've given us the answer to why Sterling was having trouble breathing, but no one knew to test for it. With OTC deficiency and other Urea Cycle disorders, its important to get treatment fast. Ammonia is highly toxic to the brain and causes damage if left untreated for too long. It is my hope that OTC deficiency is added to the routine prenatal genetic screening test, to help other OTC families detect the disorder as soon as possible to learn their options and prepare the best they can.
I wish more than anything that I would have known about OTC deficiency before Sterling was born. I would give anything to have him here with us. But I am so grateful for the Sterling silver linings he's left behind. And I will continue to share his life and legacy with whoever will listen.
Thank you so much for sharing your story with us Breinne! We are thankful you have such a caring heart and our hearts are with you and your family. <3
Would you like to share your breastfeeding story our blog? Submit it here!